Public Comments

Attachment E - Public Comments.pdf

Maternal and Child Health Bureau Performance Measures for Discretionary Grant Information System (DGIS)

Public Comments

OMB: 0915-0298

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The Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders
2670 N. Main St, Suite 150
Santa Ana, CA 92705

Phone: (714) 600-4712

Fax: (714) 600-4791

 
January 6, 2016
Administration
Diane Nugent, MD
President/ Founder
Medical Director
[email protected]

HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857

Mary Pham, Pharm.D.
Chief Operating Officer
Chief Compliance Officer
[email protected]

RE: Information Collection Request Title: Maternal and Child Health Bureau Performance Measure
for Discretionary Grants: OMB No. 0915-0298.

Judith Baker, DPH
Public Health Director
[email protected]
Lyly Tran, BA
Director of
Administration and
Grants
[email protected]
Matthew Cianciulli
Director of Quality and
Clinical Services
[email protected]
Jeri Tucker, RN
Clinic Manager
[email protected]
Michelle Khatami
Accounting Manager
[email protected]
Nina Nguyen, PharmD
Pharmacy Manager
[email protected]
Physicians
David Buchbinder MD
Hematology/BMT
Loan Hsieh, MD
Ambulatory Director
Geetha Puthenveetil MD
Red Cell Disorders
Amit Soni, MD
Hemophilia
Medical Safety Officer
Nurse Specialists
Marianne McDaniel, RN
Hemostasis Thrombosis

Dear HRSA Information Collection Clearance Officer:
The Centers for Inherited Blood Disorders (CIBD) serves as a grantee for two multi-state Regional
HRSA/MCHB grants, and has in-depth familiarity with Performance Measures having used them since
their inception. Our two grants are: HRSA’s Regional Hemophilia Network grant for the Western
States which spans California, Guam, Hawaii, and Nevada; and HRSA’s Sickle Cell Disease
Treatment Demonstration Project for the Pacific Region which spans, Alaska, Arizona, California,
Guam, Hawaii, Idaho, Nevada, Oregon, and Washington. We therefore greatly appreciate this
opportunity to comment on the proposed changes to the Performance Measures.
Comment Overview: In general, we support the proposed revisions. Notable improvements are
HRSA’s reducing the number of measures required, Yes/No response options, and willingness to use
automated collection techniques. Reduced measures will promote thoughtful choice of specific
measures for each grant program, and thereby foster the value of each measure to promote HRSA’s
overall purposes for these measures: for grantee monitoring, program planning, performance
reporting, and demonstrate alignment between MCHB discretionary programs and the MCH Title V
Block grant program. Our comments will specifically address: 1) the necessity and utility of the
proposed information collection for the proper performance of the agency’s functions, 2) the accuracy
of the estimated burden, 3) ways to enhance the quality, utility and clarity of the information to be
collected, and 4) the use of automated collection techniques or other forms of information technology
to minimize the information collection burden.
Necessity and utility of the proposed information collection for the proper performance of the
agency’s functions: We see both necessity and utility of the newly redesigned proposed measures,
specifically the three core measures required of all grantees [meeting stated aims, quality improvement
(QI), and health equity]. QI and health equity data, uniformly collected as proposed, will provide new
and valuable information that documents trends in the breadth and depth of these efforts. These data
will be useful not only to HRSA, but also to the individual grantees, who could use these data to
identify potential partners for future collaborations to advance QI and health equity efforts.
Burden Accuracy: The burden of accuracy is dependent upon the scope and size of the grant
program, hence it will be difficult to measure and should not be consistently applied to all programs.
Within a small program, the estimated 41 burden hours per response can be roughly accurate.
However, within a larger program, the amount of time needed to review the instructions; to validate and
verify information; to train personnel and to be able to respond to a collection of information; and to
transmit or otherwise disclose the information can be time consuming. We recommend adding
additional requirements such as type of program, size of the population and number of collaborators, in
order to accurately determine the burden.

Khanh Pham, RN, BSN
Physical Therapy
Grace Hernandez, RPT
Social Worker
Spencer Dunn, MSW
Pharmacy
Segundo Gallo, PharmD

Ways to enhance the quality, utility and clarity of the information to be collected. In general, we
recommend adding definitions for each form and measure’s key terms. As definitions may vary, we
recommend HRSA seek guidance from nationally recognized agencies such as the Institute of
Medicine, or Agency for Healthcare Quality and Research to determine the definitions Good starts are
at CB 2 – technical assistance, which is defined under the Tier 2 measure. But health equity and QI,
for example, are core measures that would benefit from definitions of those key terms.

The Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders
2670 N. Main St, Suite 150
Santa Ana, CA 92705

Phone: (714) 600-4712

Fax: (714) 600-4791

 
Automated collection techniques: The proposed measure CB 6 (Page 47, Attachment B): percent programs
supporting the development of informational products is important, but currently burdensome to collect. We applaud your
proposal to not require full details of each specific product. However, requiring zero descriptors under Tier 2 eliminates
value opportunities to examine and potentially use these products. Proposed solutions: to allow respondents to
optionally input the web addresses of products, and provide a fillable PDF for grantees. Furthermore, Tier 3 for this
measure would benefit from a PDF fillable option linked to the above Tier 2 recommendation.
Thank you again for the opportunity to provide input into this important matter.
Sincerely,

Diane Nugent, MD
President/Founder

Judith Baker, DPH
Public Health Director

January 5, 2016
HRSA Information Collection Clearance Officer
Parklawn Building - Room 10–29,
5600 Fishers Lane, Rockville, MD 20857
Via email - [email protected]
Re: Information Collection Request: Maternal and Child Health Bureau Performance Measures
for Discretionary Grants, OMB No. 0915±0298

Dear Sir or Ms.:
Thank you for the opportunity to comment on the Information Collection Request for the
Maternal and Child Health Bureau Performance Measures for Discretionary Grants. The
package of proposed performance measures reflects significant and thoughtful work that
should help the Maternal and Child Health Bureau meet their goal of telling a better story about
the impact of their varied grant activities on the health of women, children, and families. We
also greatly appreciate the intent to align measures with the state Title V MCH Block Grant
Performance Measures.
In general, our staff review found agreement with many of the proposed measures. We
appreciate the difficulty of defining a finite number of measures that can be relevant to so
many varied grant programs.
However, at present, a few items seem unclear. Specifically, which measures will apply to which
grantees and who gets to choose? Further, we could not find information indicating
approximately how many measures any given grantee would be required to report on. This
makes it impossible to assess the accuracy of the estimated burden (41 hours) published in the
Federal Register Notice. We recognize that there is wide variability in the intent, scope, and
budget size of discretionary grants, which necessitates flexibility in terms of the number and
which measures are most appropriate. We therefore recommend that HRSA keep reporting
requirements reasonable/commensurate with the project scope and respectfully submit that
reporting on the most relevant 5-8 measures should be sufficient to demonstrate impact while
minimizing the reporting burden, such that it remains in line with the estimate in the federal
register notice.
Another general suggestion we have is for each question under Tier 2, grantees should have an
opportunity to add "Other: specify" to the list of options. Having a set list of activities could be
deemed limiting and inhibit creativity and innovation in designing project activities.

Additionally, we caution that it is problematic for many national groups to count numbers
served when we are talking about programs charged with serving all women, children, families.
Again we thank you for the work in developing the proposed measures and this opportunity to
comment. Specific suggestions are included below.
Sincerely
/s/
Brent Ewig, MHS
Director of Policy

On page 7, regarding the well woman visit, we note that under well child visit there is a
measure for quality, yet none is included in the well woman visit and in timely prenatal care.
We recommend you consider adding to be consistent.
On page 8, regarding depression screening, could you consider broadening to screen for mental
health issues in general? For example, by identifying women with anxiety disorders more
women might also be identified and receive treatment for substance use disorders. Also, the
number of women referred to treatment is important, but we suggest consider measuring how
many are lost in the system.
On page 18, regarding Developmental Screening - under "Grantee Data Sources" it lists
NOM#12, which is newborn screening. Please consider that NPM#6 (developmental screening)
aligns with the Tier 4 outcome measures and may seem the better match.
On page 20, regarding Injury Prevention – please consider if NPM#7 should also be listed under
"Grantee Data Sources.”
On page 21 regarding Family Engagement: Tier 4: numerator: What does “meaningful” mean?
How will this be measured? Will grantees be expected to identify numbers of CYSHCN in
catchment area? It’s not clear if this is currently possible. They can measure at state level
through NSCH, but will grantees have access to county/community level numbers on CYSHCN as
part of NSCH?
On page 23 regarding Medical Home; Tier 4 numerator will be potentially difficult to determine
what % of target population demonstrate a direct linkage to coordinated medical home
community as a direct result of activities conducted by the projects.

On Page 26, regarding Transition - similar to above, NPM#6 is listed under "Grantee Data
Sources.” We suggest considering if NPM#12 would be a better fit.
On page 33, for the percent of programs promoting and/or facilitating adequate health
insurance coverage, consider adding a category under Tier 2 regarding policy work i.e. engaging
stakeholders, developing recommendations, participating in coalitions/work groups, etc.
Additionally, this appears to be an area where the measures might not match the activities.
"Program participants" are not always the recipient of the TA, especially if we hope that
programs are educating not only families/consumers, but other leaders in their states. We
suggest further work to bridge this potential gap. Finally, please consider including discussion
of the significance for adults here or explicitly state in the DGIS performance measure that kids
are the target (as you do in the Title V NPM).
On page 36, where data collection tables are first introduced, pregnant women and adolescents
are included, but women in general are not. This isn’t reflective of life course and cross-cutting
without including women preconception, interconception, and postpartum. We suggest
considering a domain for women of childbearing age. Women age 25 and over are included in
the budget forms by types of individuals served.
On Page 44, regarding the measure of percent of programs providing technical assistance on
MCH priority topics, it is unclear what is being counted. Is it the number of people who
received TA on how to address this measure in their states/communities? Or is it the number
of people served by the organization receiving the TA? Please clarify.
On page 47, regarding the percent of programs supporting the development of informational products
and through what means, and related outcomes. To our knowledge, MCHB doesn’t provide TA or
standard recommendations on how to use Google analytics or other resources to determine
how resources are being downloaded. While AMCHP does this (in general) it is a challenge for a
number of grantees, especially smaller ones. Some additional guidance on means through
which these metrics are collected will facilitate comparability across grantees.
On page 48, regarding introduction of the core measures, it is presumed but not clear from the
narrative that all grantees will report on these three measures. It would be helpful for that to
be clarified and would make much more sense to have the core measures appear first in the
document. As written, they are buried in the middle and not clearly marked as required for all
grantees.
On page 94, regarding Training for Policy Development, consider adding “Writing an Op-Ed or
Letter to the Editor” under possible activities in tier 2.
On page 134, regarding father / partner involvement, we are pleased to see this proposal and
are strongly supportive of inclusion of these measures.

On page 143, under Models of Family Engagement, please consider adding “Children’s
Hospitals” as a specific entity under section b.
On page 150, where the terms “Direct Health Care, Enabling Services and Population Based
Services” are introduced for the first time, we strongly encourage you to include the definitions
used in the MCH Block Grant Guidance so there is consistency.

1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
            Consider defining “meaningful participation” for Tier 4, measure 1.
 
The percentages calculated in Tier 4 will serve as helpful benchmark measures to determine any changes
in the future. However, without a sense from MCH leadership as to how many family and CSHCN
leaders there should be (or percentage of CSHCN population) the current numerators and denominators
do not indicate achievement nor need for improvement, only benchmark measures.
 
It’s important to point out that the target of many of our programs is individuals with genetic conditions
(and their families), who make up only a portion of the estimated population of children with special
health care needs (CSHCN). It is difficult to estimate and inaccurate for us to report our success towards
any of the CSHCN measures because our programs focus on genetic services and individuals with
genetic conditions, not the overall population of CSHCN.
 
Measure:
CSHCN 2: The percent of programs promoting and/ or facilitating medical home access and use among
children and youth with special health care needs.
 
Comments: Many of our programs focus on population health and determining individual level related
outcomes as in Tier 4 might not be possible or realistic. Clear expectations for related outcomes should
be specified at the outset of the program so that grantees that do not deliver direct services are not asked
to quantify outcomes on an individual level.
 
 

Sincerely,
Sharon
Sharon Alexander, MPA | Assistant Director of Strategic Health Initiatives
Genetic Alliance | 4301 Connecticut Ave NW Suite 404 | Washington DC 20008
202.966.5557x203| [email protected]
­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Alisha Keehn 
To: HRSA Paperwork 
Cc: Debbie Maiese , Michael Watson 
Date: Tue, 5 Jan 2016 21:57:00 +0000
Subject: Maternal and Child Health Bureau Performance Measures for Discretionary Grants Comments
To whom it may concern,
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JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 

 
To ensure access to quality genetic services, the Health Resources and Services Administration (HRSA)
Maternal and Child Health Bureau, Genetics Services Branch funds a National Coordinating Center (NCC) at
the ACMG, a National Genetic Education and Consumer Network at the Genetic Alliance, and seven Regional
Genetic Service Collaboratives (RCs). This NCC/RC system has a mission to develop national infrastructure
for public health and clinical providers to address gaps and improve direct and enabling services for families
and individuals affected by genetic conditions.    
 
Each year, approximately 4.2 million newborns are screened for genetic diseases. The American College of
Medical Genetics and Genomics (ACMG) estimates that about 12,500 babies will be identified with a newborn
screening condition each year. With follow­up services and treatment, most of these babies will lead healthy
lives.

 
In its national evaluation, the NCC/RC system currently uses HRSA Performance Measure #41 and questions
from the National Survey of Children’s Health (NSCH) to assess its contributions to Healthy People 2020
objectives. This effort will be strengthened by the addition of several measures in the DGIS, but only if the
NSCH retains the question that is currently in field tests that asks whether the respondent “Has a doctor or
other health care provider EVER told you that this child has... Genetic or inherited condition (response A16)”. 
The addition of a heritable condition response category will give MCH constituents, other survey users, and
the MCH Genetics Services Branch critical information by which to analyze variables in the NSCH to report on
DGIS measures.  And if the respondent were asked to specify the genetic condition formatted similarly to A27
Other Mental Health Condition, then even more information would be available to characterize the genetic
conditions.
 
In addition, to having national population estimates of children with heritable conditions, the DGIS measures
could be strengthened by making the following revisions:
 
Measure

ACMG Recommendation

CSHCN 1

Add Tracking and Monitoring to Tier 2 to emphasize the importance of data collection
around family engagement.
 
Add regional to the geographic units included in Tier 4.  This addition would recognize that
some activities can be more efficiently achieved on a regional basis.
 
While desirable to have racial and ethnic data on family CSHCN leaders, how feasible is it
to obtain this information?  Perhaps collecting data to show that affected individuals and
families are engaged as CSHCN leaders would be easier to report.
 

CSHCN 2

Table 1 is to be used to report activities.  It would be helpful to clarify where local public
health activities should be counted. As currently constructed this table has the columns of
Community Partners separate from State and National.  We recommend that HRSA
distinguish between governmental and non­governmental partnerships.

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JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
Tier 4 could be enhanced by including other performance measures, e.g., promoting a
framework for medical home, increasing the number of medical homes, or improving care
coordination with specialists. 
LC 1

Add Tracking and Monitoring to Tier 2 to emphasize the importance of data collection
around health insurance coverage.   Similarly, add Tracking and Monitoring to the LC1
Data Collection form.
In Tier 4, it would be helpful to provide a definition for adequate health insurance coverage.

CB 1   
 

CB 2

In Tier 3, the list of State agencies should separate Newborn Screening (NBS) from
Genetics as each is an important partner to HRSA/MCHB.   Because HRSA has begun to
emphasize genetics across the lifespan, it is critical to create distinct categories for NBS
and Genetics.  Through this ontology, we believe that HRSA will have additional insights
about the extent to which genetics is being addressed by its grantees.  
Genetics is missing from the list of MCH priorities.  Genetics should be added to Tier 3
and to the Data Collection Form for CB2.
 
As currently constructed the Data Collection Form for CB2 has the columns of
Community/Local Partners separate from State or National Partners.  We recommend that
HRSA distinguish between governmental and non­governmental partnerships.
 
The definition of Technical Assistance is well done.  We applaud HRSA for recognizing
that this is a collaborative activity that can be done on a regional basis. 
 

CB 3

This is an opportunity to ask grantees about the State and national data sources that they
are using to assess their activities and impact.  It could give data HRSA data on the use
of the National Survey of Children’s Health, birth defects registries, etc.  This data would
help support the importance taxpayers’ investment in these State and national data
resources.   
 

CB 6

Tier 3 should also include some measure of use of these products.  The NCC/RC system
uses number of unique visits and home page visits to measure the use of its Internet
resources.  Impact factors of publications might be another metric to consider.
 

Core 2

We applaud HRSA for recognizing cross­sectorial collaborative across multiple
organizations in Tier 2.   We suggest that an additional aim of this type of collaboration
might be improved coordination across MCHB­funded programs.
 

Table 1

Add Tracking and Monitoring as a new row.  Data collection and analysis is sufficiently
distinct from quality improvement to warrant its own row. 

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JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
As indicated in our comments on CSHCN 1, we recommend that HRSA distinguish
between governmental and non­governmental partnerships in the column headings.
 
 
Thank you for the opportunity to comment on these proposed measures.  We stand ready to use them in
reporting on our HRSA grant.
 
Sincerely,
 

 
 
Alisha Keehn, MPA
Project Manager, NCC
ACMG
 
 
 
Alisha Keehn, MPA
Project Manager, NCC
American College of Medical Genetics and Genomics
7220 Wisconsin Ave, Suite 300
Bethesda, MD 20814
(301) 718­9603
[email protected]
 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "Widrick, Rebekah (CCF)" 
To: HRSA Paperwork 
Cc: 
Date: Tue, 5 Jan 2016 21:38:19 +0000
Subject: NYS comments to HRSA Maternal and Child Health Bureau performance measures for grant
programs
https://mail.google.com/mail/u/0/?ui=2&ik=bd0a5c2415&view=pt&search=inbox&msg=15218640d04cee59&siml=15218640d04cee59

16/19

1/8/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
Stephanie Busch, NREMT
Vermont Emergency Medical Services for Children (EMSC) Program Coordinator
Division of Emergency Preparedness, Response, and Injury Prevention
Vermont Department of Health
108 Cherry Street, Suite 201
Burlington, VT 05401
 
[email protected]
Cell: 802.734.4210 
Desk: 802.863.7313
Fax: 802.863.7577
 
 
 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Lisa Rascon 
To: HRSA Paperwork 
Cc: 
Date: Tue, 5 Jan 2016 19:58:16 +0000
Subject: University of Arizona Pediatric Pulmonary Center Feedback

1.       Thank you for giving us this opportunity to review and provide feedback on the proposed performance measures.  We would like to support the feedback provided by 
University of Alabama at Birmingham Pediatric Pulmonary Center.  We believe the extra reporting measures and capacity building measures will not focus on the aims and goals the
PPCs have in their training grant and will provide duplication in some areas.

Th
Thank you,

Lisa
1.     
2.       
Lisa Rascon, M.Ed
The University of Arizona Pediatric Pulmonary Center
(520)626­1567
www.uappc.peds.arizona.edu

Kogan, Michael (HRSA) 
To: Jillian Maccini , "Resnick, James (HRSA)" 
Cc: "Dykton, Christopher T. (HRSA)" , "Ghandour, Reem (HRSA)" , Paul Rohde 

I’m off this Friday.
 
Michael D. Kogan, PhD
Director, Office of Epidemiology and Research
HRSA / Maternal and Child Health Bureau
5600 Fishers Lane, Room 10­77
Rockville, MD 20857
301­443­3145
301­480­0508 (fax)
[email protected]

 
Please note new office address
 

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January 4, 2016
Re: Health Resources and Service Administration’s Information Collection Request
Federal Register / Vol. 80, No. 215 / Friday, November 6, 2015
Maternal and Child Health Bureau Performance Measures for Discretionary Grants

1100 Wayne Avenue
Suite 1000
Silver Spring, MD 20910
t: 301-588-8252
f: 301-588-2842
www.aucd.org
Karen Edwards, MD, MPH
President

To Whom it May Concern,

Celia Feinstein, MA
President-Elect

The following are comments from the Association of University Centers on
Disabilities (AUCD) on the Health Resources and Service Administration’s
Information Collection Request published in the Federal Register / Vol. 80, No. 215 /
Friday, November 6, 2015 / Notices titled Maternal and Child Health Bureau
Performance Measures for Discretionary Grants. AUCD represents itself as an
MCHB autism training resource center grantee; it also represents the Leadership
Education in Neurodevelopmental and Related Disabilities (LEND) training program
grantees as LENDs are members of AUCD. Both the autism training resource center
and the LENDs are funded through MCHB’s Division of MCH Workforce
Development (DMCHWD).

Olivia Raynor, PhD
Past-President

These comments will address HRSA’s request for comments on (1) the necessity and
utility of the proposed information collection for the proper performance of the
agency’s functions, (2) the accuracy of the proposed burden, (3) ways to enhance the
quality, utility, and clarity of the information to be collected, and (4) the use of
automated collection techniques or other form of information technology to minimize
the information collection burden.
Program-Specific Measures
There are 8 Program-specific measures developed by DMCHWD that are relevant to
the LENDs; we also understand that some of these will likely be assigned to the
autism training resource center. Comments on these are as follows:
Training 1 (Family member/youth/community member participation): The use of
“Family members/youth/community members” in this performance measure is
confusing. It is not clear whether a program needs to have all of these categories of
participants for an element to indicate a YES response for each element, or whether a
program just needs one of these groups. We recommend including some clarifying
language for this.

Leslie Cohen, JD
Past-Past President
Brent Askvig, PhD
Secretary
Bruce Keisling, PhD
Treasurer
Harolyn Belcher, MD, MHS
Member at Large
Cynthia Ellis, MD
Member at Large
Amy Hewitt, PhD
Member at Large
Stephan Viehweg, ACSW, LCSW
Member at Large
Philip Wilson, PhD
Member at Large
Dawn Olson, BS
Council on Community Advocacy
Mark Smith, MS
Council on Community Advocacy
Dan Zhang, PhD
Council on Research and Evaluation
Maria Mercedes Avila, PhD
Multicultural Council
Christine Vining, MA
Multicultural Council
Jerry Alliston, PhD
Community Education and
Dissemination Council
Michelle Schladant, PhD
National Training Directors Council
Zipporah Levi-Shackleford, MEd
Trainee Representative
Andrew J. Imparato
Executive Director

Training 13 (Policy): Most of the elements for this measure (2-6) include additional data collection in
addition to a YES/NO response. The usefulness of the level of detail being requested for training
programs is unclear. In particular, Element 3 requires the documentation of the percentage of trainees
reporting increased policy knowledge and increased policy skills. This type of data (increased
knowledge and skills) is not collected for any other training area and it is unclear why policy should be
singled out for this, adding additional reporting burden to programs. In addition, it is not specified which
trainees should be reported (i.e. long-term, medium-term, etc.). We recommend that simple YES/NO
responses be required for all of the elements of this performance measure.
Forms
There are several forms that have traditionally been assigned to the LEND training programs and the
autism training resource center. Comments on these are as follows:
Technical Assistance/Collaboration Form: This form includes a new “List B” for grantees to select the
topic(s) of technical assistance/collaboration. This new list no longer includes the topics most relevant
for LEND training programs and the autism training resource center such as Early Childhood
Health/Development, CSHCN/Developmental Disabilities, and Autism. In addition, there is no “Other”
category. Given that the funding for LEND training programs and the autism training resource centers is
currently authorized under the Autism CARES legislation and MCHB must report specifically on
activities related to autism and related developmental disabilities, we suggest including at minimum the
topics CSHCN/Developmental Disabilities and Autism. We also suggest adding in an “Other” response
selection.
Continuing Education Form: The same comments and recommendations made for the Technical
Assistance/Collaboration form above would apply to the Continuing Education form. We understand,
however, that the DMCHWD may be replacing this with another form that addresses these comments.
Core Measures
It is our understanding that the three new Core Measures will be required of all MCHB grantees.
Comments on these are as follows:
Core Measure 1 (Grant Impact): LEND training grants and the autism training resource center grant are
all currently 5 years in duration. It is not unusual for programs to make some revisions to objectives
during the grant period in the process of continuous quality improvement. It is unclear how this will be
addressed within this performance measure. We have concerns that with prepopulated objectives from
the grant application, some programs that make changes to their objectives may have the appearance of
poor performance. If this measure is to be used, we recommend that there be a process whereby
programs, in consultation with their project officers if needed, are able to change the prepopulated
objectives.
Core Measure 2 (Quality Improvement): In Tier 4, the related outcomes listed do not correspond to all of
a program’s potentially reported quality improvement aims (Tier 2); therefore, important information
could be missing related to positive outcomes of quality improvement efforts. We recommend that for
Tier 4, the related outcomes be expanded to match the aims reported in Tier 2, and that programs only
be required to complete Tier 4 outcomes for the aims selected in Tier 2.

Capacity Building Measures
It is our understanding that the LEND training programs and the autism training resource center may be
assigned some or all of the new Capacity Building measures. Comments on these measures are as
follows:
Capacity Building 1 (State capacity): It is our understanding that this performance measure is intended
for programs of a national scope such as resource centers and therefore would not be appropriate for
LEND training programs. We understand that it could potentially be assigned to the autism training
resource center, however. This performance measure in its current form is very confusing. It is unclear
what information goes in the blank that is to be “prepopulated with program focus” in Tier 1. Given that
this impacts most of the responses in all of the following Tiers, it is difficult to make specific
recommendations on the usefulness and appropriateness of this measure for the autism training resource
center. We can comment that many of the Tier 2-4 elements do not appear to apply to the autism training
resource center based on its current function, however, and therefore this may not be a useful measure to
assign.
Capacity Building 2 (Technical Assistance): The data required in this measure overlap substantially with
the data that LEND training grantees and the autism training resource center already provide in the
Technical Assistance/Collaboration form. In addition, particularly for the LEND training programs, we
do not feel that the reporting burden for the level of detail requested in this measure is reasonable. We
would recommend that this performance measure NOT be assigned to LEND training programs.
If this measure must be assigned in some fashion, we recommend that Tier 3 NOT be assigned and that
there be an auto-population of data between this performance measure and the Technical
Assistance/Collaboration form so grantees are not entering the same data twice.
Capacity Building 3 (Impact Measurement): LEND training programs report impact data on trainees as
part of their program-specific performance measures, therefore it is not clear how useful this measure
would be for these programs. We would suggest that this measure NOT be assigned or that only Tiers 1
and 2 be assigned if necessary.
Capacity Building 5 & 6 (Scientific Publications and Products): The data required in these two measures
overlap completely with specific data required for the Products, Publications and Submissions Data
Collection Form. If these measures must be assigned, we recommend that there be an auto-population of
data between these two performance measure and the Products, Publications and Submissions Data
Collection Form so grantees are not entering the same data twice.
Domain Specific Measures
It is our understanding that some Domain Specific Measures may be assigned to LEND training
programs and the autism training resource center. There are only three Domain Specific Measures that
we think could be considered for these programs: CSHCN 2 (Medical Home), and CSHCN 3
(Transition), and Child Health 3 (Developmental Screening).
CSHCN 2 (Medical Home): Tiers 1 and 2 of this measure could be considered for LEND training
programs. The additional data required in Tiers 3 and 4 is not reasonable for these programs as medical
home is not a core area of focus.

CSHCN 3 (Transition): Tiers 1 and 2 of this measure could be considered for LEND training programs.
The additional data required in Tiers 3 and 4 is not reasonable for these programs as transition is not a
core area of focus for these programs.
Child Health 3 (Developmental Screening): Tiers 1 and 2 of this measure could be considered for LEND
training programs. The additional data required in Tiers 3 and 4 is not reasonable for these programs.
Lastly, comments are requested on the accuracy of the proposed burden (41 hours) for completing the
performance measures. This is difficult to estimate given the lack of clarity about which performance
measures will be assigned to LEND training programs and the autism training resource center beyond
the Program Specific Measures and the Core Measures.
Thank you for the opportunity to provide feedback on the Maternal and Child Health Bureau
Performance Measures for Discretionary Grants. Please do not hesitate to contact Dr. Jamie Perry with
questions about these comments: 301-588-8252 or [email protected].

Sincerely,

Jamie J. Perry, MD, MPH
Director, MCH Technical Assistance
Association of University Centers on Disabilities

January 5, 2016
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1019
Phone: 847/434-4000
Fax: 847/434-8000
E-mail: [email protected]
www.aap.org

Executive Committee
President
Benard P. Dreyer, MD, FAAP
President-Elect
Fernando Stein, MD, FAAP
Immediate Past President
Sandra G. Hassink, MD, FAAP
Executive Director/CEO
Karen Remley, MD, FAAP

Board of Directors
District I
Carole E. Allen, MD, FAAP
Arlington, MA
District II
Warren M. Seigel, MD, FAAP
Brooklyn, NY
District III
David I. Bromberg, MD, FAAP
Frederick, MD
District IV
Jane M. Foy, MD, FAAP
Winston Salem, NC
District V
Richard H. Tuck, MD, FAAP
Zanesville, OH
District VI
Pamela K. Shaw, MD, FAAP
Kansas City, KS
District VII
Anthony D. Johnson, MD, FAAP
Little Rock, AR
District VIII
Kyle Yasuda, MD, FAAP
Seattle, WA
District IX
Stuart A. Cohen, MD, FAAP
San Diego, CA
District X
Sara H. Goza, MD, FAAP
Fayetteville, GA

HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
Sent via email to: [email protected]
RE:

MATERNAL AND CHILD HEALTH BUREAU PERFORMANCE
MEASURES FOR DISCRETIONARY GRANTS

To Whom It May Concern:
The American Academy of Pediatrics (AAP) applauds the Health Resources and Services
Administration (HRSA) efforts to re-examine the continuation of utilizing reporting
requirements for grant programs administered by the Maternal and Child Health Bureau
(MCHB), including national performance measures, previously approved by the Office of
Management and Budget. The AAP submits the comments below for consideration. An
opportunity to discuss the details of this response in more detail would be welcome, if
appropriate.
GENERAL COMMENTS
 The reporting process seems more streamlined compared to earlier processes; projects
will only respond to measures that specifically apply to them.
 It is helpful to have the program specific measures assigned by project officers who
are most familiar with the projects and can choose the most applicable measures. It
may be beneficial to indicate somewhere throughout the measures that it is preferable
for organizations that are recipients of cooperative agreements to partner with their
project officer to determine what specific measures apply to them.
 Under the Impact Measurement goal and Capacity Building Domain, it would be
helpful to better describe some of the tools, such as case reports and qualitative
assessment.
 In general for larger national level projects (such as national technical assistance
centers) it is often challenging to answer many of the Tier 4 questions about related
outcomes due to the difficulty in calculating the target population in such a large
catchment area.
 In general, the Academy supports the new tiered response format as it is clear and
direct. However, it is suggested that an additional option be given to grantees that
respond “No” in Tier 1. Given that MCHB wants to collect useful data, adding an
additional question such as "How or why is the measure not applicable to you?"
would clarify what is expected in terms of a response and also would help grantees
provide more meaningful data to project officers as well as resource centers. There is
no guarantee that 100% of grantees assigned a measure will respond "Yes" to it.
Knowing why a grantee would say "No" is important from a quality improvement
perspective, as well.
 The Core Measures are important for all grantees and the AAP is supportive of
retaining them.






The necessity and utility of the proposed information collection for the proper performance of the
agency’s functions is laudable.
It is difficult to assess the accuracy of the estimated burden in a meaningful manner given the
information available for public comment; however, upon review it appears that the estimated burden
will be less as compared to what was required from discretionary grantees previously.
The document and information contained within includes some ways to enhance the quality, utility
and clarity of the information to be collected.
It is difficult to assess from the available information whether or not the use of automated collection
techniques or other forms of information technology to minimize the information collection burden
will truly decrease the burden related to same for discretionary grantees.

DOMAIN SPECIFIC MEASURES
Perinatal Infant Health
PIH 2: Breast Feeding
 Consider including an additional measure under Tier 4—Percent of premature infants (less than 37
weeks) who exclusively received human milk in the Neonatal Intensive Care Unit to address the
increased risk of sepsis and necrotizing enterocolitis. Consider including the following numerator—
Premature infants of program participants who were exclusively fed human milk while in the NICU.
Consider including the following denominator—Premature infants of program participants.
PIH 3: Newborn Screening
 As written, this measure appears applicable only to state newborn screening and follow up programs.
There are numerous discretionary grantees who engage in work/activities focused on various aspects
of newborn screening to whom this performance measure may apply (eg, critical congenital heart
defects, early hearing detection and intervention, genetics/family history). If these discretionary grants
are taken into consideration and required to report information related to this performance measure,
much of the information listed in the definition tiers will need to be modified for relevance.
 The Bright Futures National Center (BFNC) is funded through a cooperative agreement with MCHB
HRSA. Section 2713 of the ACA (Coverage of Preventive Health Services) recognizes the importance
of preventive care for children by including a critical provision to ensure that children enrolled in all
individual and group non-grandfathered health care plans receive the preventive care as recommended
in the Bright Futures Guidelines (and on the Bright Futures/AAP Periodicity Schedule). Newborn
Screening is on the Bright Futures/AAP Periodicity Schedule. Newborn screening is promoted
through the BFNC. However, individual screening and follow-up could not be reported through BFNC
as it measured at the community and/or health care provider level.
Child Health
CH 1: Promotion of Well-Child Visit
 The Bright Futures National Center (BFNC) is funded through a cooperative agreement with MCHB
HRSA. Section 2713 of the ACA (Coverage of Preventive Health Services) recognizes the importance
of preventive care for children by including a critical provision to ensure that children enrolled in all
individual and group non-grandfathered health care plans receive the preventive care as recommended
in the Bright Futures Guidelines (and on the Bright Futures/AAP Periodicity Schedule).
 There are 31 recommended child well visits on the Bright Futures/AAP Periodicity Schedule. Child
well visits are promoted through the BFNC. However, the % of children enrolled could not be
reported through BFNC as it measured at the community and/or health care provider level.
 Suggest considering ways to incorporate language from Bright Futures into these measures (eg, when
“annual screenings” are referenced).

CH2: Quality of Well-Child Visit
 As noted above, there are 31 recommended child well visits on the Bright Futures/AAP Periodicity
Schedule. Child well visits are promoted through Bright Futures. However, measuring the subjective
value of “quality” is very difficult. The proposed measure should more clearly define “quality” when
gathering the % of providers conducting the recommended well child visits.
CH3: Developmental Screening
 Tier 3—Clarification is needed regarding what “# receiving education through outreach” means and
how the number related to same should be calculated. The form does not provide adequate
information for grantees completing/measuring same in order to ensure consistency in responses
among grantees. In addition, it may be difficult to differentiate between different groups, such as
consumers versus providers/professionals, especially for ongoing outreach activities, such as
newsletters. The resources required to do this in an accurate and methodical manner would be
excessive.
 Tier 4—The measure focuses on developmental screening and follow-up, but the outcome (numerator
and denominator) only focuses on the completion of developmental screenings. Consider adding
another outcome related to developmental screening referrals/follow-up to align with the measure and
to ensure that action is being taken when a positive developmental screen is found.
 Developmental screening is on the Bright Futures/AAP Periodicity Schedule (9 month, 18 month, and
30 month well child visits). Developmental screening and surveillance is promoted through Bright
Futures for all well child visits. However, individual screening and follow-up could not be reported
through BFNC as it measured at the community and/or health care provider level.
Children and Youth with Special Health Care Needs
General—Suggest that the current acronym used (CSHCN) be changed to CYSHCN to reflect inclusion of
youth.
CSHCN 1: Family Engagement
 Performance Measure, Goal, Measure and Tier 1—Suggest clarifying the following question: Is the
program promoting/facilitating family engagement among FAMILIES of children and youth with
special health care needs (and perhaps youth themselves)? As it reads now, the language implies
CSHCN engagement.
 Tier 2—Suggest adding an option related to engagement of families in strategic planning/advisory
capacity.
 Tier 3—Suggest clarifying how “# educated/receiving information” is different from “# receiving
TA”; also suggest further clarification and guidance is needed in order to adequately and accurately
track the “# educated/receiving information”.
 Tier 4—Need clarification regarding what constitutes “teams” in several items included in this tier;
need further guidance on where the number and denominator information for this tier can be found so
that grantees are able to report consistently and in line with how/what other grantees are reporting;
catchment area implies that this information may be applicable only to local/community/state
grantees, not national grantees and, as such, needs clarification; and guidance is needed to help
grantees determine what constitutes “racial and ethnic family and CSHCN leaders”.
CSHCN 2: Access to and Use of Medical Home
 Tier 2—Suggest clarifying “referral/care coordination.” Some programs may be providing direct care
coordination services, while others (national technical assistance centers) do not necessarily
coordinate care for families but provide resources for others to do so.
 Tier 3—Suggest clarifying “# receiving tracking and monitoring.” Does this refer to tracking and
monitoring number of medical homes in the grant’s catchment area, or monitoring number of CSHCN





who receive care in medical homes, or monitoring in general of grant activities for evaluation
purposes?
Tier 3—Suggest clarifying how to distinguish between what constitutes “# trained” versus
“#educated/receiving information”. Need clarification regarding what is meant by “# referred” and “#
receiving tracking and monitoring”.
Tier 4—Suggest clarifying what “direct linkage” means and how to define and measure it.
Significance—How can a “cultivated partnership” be measured in a quantifiable and meaningful way?

CSHCN 3: Transition to Adult Health Care
 Tier 2—Consider including youth involvement in designing and implementing grantee activities. If
added, this would need a related measure in Tier 3 (eg, “#youth involved”).
 Tier 3—Suggest further clarifying what tools can/should be used to assess readiness (“# assessed for
readiness”).
 Consider encouraging grantees to utilize the MCHB-funded Got Transition materials; specifically
those focused on the 6 core elements of healthcare transition and related measures, tools, materials and
resources.
 Significance—Suggest language that is more appropriate for this age group. Perhaps language that
emphasizes youth/young adult involvement in and responsibility for their own health care.
Adolescent Health
AH 1: Adolescent Well Visit
 Consider including the importance of preparing for the transition to adult health care.
 There are 11 recommended adolescent well visits on the Bright Futures/AAP Periodicity Schedule.
Adolescent well visits are promoted through Bright Futures. However, the % of children enrolled
could not be reported through the Bright Futures National Center as it measured at the community
and/or health care provider level.
 To be consistent with Bright Futures Guidelines recommendations, this measure should be revised to
include 11-21 year olds.
AH 3: Screening for Major Depressive Disorder
 Adolescent depression screening is on the Bright Futures/AAP Periodicity Schedule for 11-21 year
olds. Depression screening is promoted through Bright Futures for all adolescent well visits.
However, individual screening and follow-up could not be reported through the Bright Futures
National Center as it measured at the community and/or health care provider level.
 To be consistent with Bright Futures Guidelines recommendations, this measure should be revised to
include 11-21 year olds.
Life Course/Cross Cutting
LC 3: Oral Health
 Consider adding the following measure: Percent of program participants aged 6 months to 5 years who
received topical fluoride varnish application during the last year. Consider including the following
numerator: infants and children involved with the program who received topical fluoride varnish
application in the reporting year. Consider including the following denominator: infants and children
involved with the program during the reporting year.
 Consider incorporation of oral health needs and challenges specific to the CYSHCN population.
Capacity Building
CB 2: Technical Assistance
 Tier 2—Suggest adding “Families”.
 Tier 2—Although a definition/description of technical assistance is provided, the definition is so broad
and all encompassing that it has the potential for grantees to include far too much related to their
work/activities in same. Additionally, there is a large potential for grantees to “double report”

information—because it may fall under technical assistance as well as other categories required for
reporting purposes.
CB 3: Impact Measurement
 Tier 1—Suggest clarifying/defining what “impact measurement” means.
 Tier 2—Suggest specifying what a “case report” means and clarifying how this relates to all
discretionary grantees.
 Tier 4—Suggest rethinking and reframing this tier and the information contained in same because, as
written, it does not appear that meaningful data/information related to outcomes can be collected.
CB 4: Sustainability
 Tier 3—Need clarification on what “How many are reached through those activities?” and what N/A
means; this is confusing as presented.
CB 5: Scientific Publications
 Tier 4—Is tracking of dissemination vehicles a way to assess outcomes? Also, there are numerous
challenges related to tracking the information listed correctly and adequately; doing so potentially
requires an inordinate amount of resources and related capacity to monitor/track same.
Core
Core 1: Grant Impact
 Will there be an opportunity for grantees to indicate if they have changed an objective during the
course of the project or if they have partially met an objective?
 This appears to be a somewhat streamlined approach to what was used in the past; the AAP is
supportive of same.
Core 2: Quality Improvement
 It would be helpful to give some examples of quality improvement initiatives so that grantees have a
better sense of what HRSA is attempting to collect information about. Similarly, health equity may
bring to mind different concepts for different grantees, therefore, it would be helpful to define health
equity.
 Why is the focus on “organizational” quality improvement and what does that mean?
 The aims listed as examples are high level and not specific; it may be challenging for grantees to
categorize their quality improvement project aims/measures in the categories listed. Those listed are
too specific and also too variable for any type of reliable and consistent grant reporting.
 Tier 4—Why is the focus only on population health and how is that measured/quantified in a
meaningful manner given the broad definition of same? Why is the focus on “organizational”
improvement as opposed to (or in addition to) individual improvement? Not all quality improvement
is organizationally focused.
Division of Workforce Development
Training 1: MCH Training Program Family Member/Youth/Community Member Participation
 The AAP recommends that measures related to family engagement and cultural competence (Training
1 and Training 2) be modified so that they are applicable to Healthy Tomorrows’ grantees (eg, change
the wording from MCH Training Programs to DMCHWD Programs).
Training 2: MCH Training Program Cultural Competence
 The AAP recommends that measures related to family engagement and cultural competence (Training
1 and Training 2) be modified so that they are applicable to Healthy Tomorrows’ grantees (eg, change
the wording from MCH Training Programs to DMCHWD Programs).

Training 3: Healthy Tomorrows Title V Collaboration
 It is very important for Healthy Tomorrows grantees to establish meaningful linkages with Title V and
other MCH-related programs as these programs are excellent resources and partners for grantees.
Miscellaneous
 The AAP supports the following four additional measures for HT grantees:
o CB 3 Impact
o CB 4 Sustainability
o CB 6 Products
o CH1 Well Child Visit
We understand that these additional measures may not be applicable to some HT grantees, but many of our
grantees address a wide range of topics and could potentially provide meaningful data with regard to these
elements.
Division of Healthy Start and Perinatal Services
HS 2: Medical Home
 Suggest defining medical home and/or breaking it down into a few measurable characteristics. The
numerator, as described, would be incredibly challenging to calculate in a meaningful manner.
Financial and Demographic Data Elements
Form 4: Budget Project and Expenditures
 The AAP agrees with the removal of the “Infrastructure Building” category on Form 4. Many projects
that do not provide direct care to patients will benefit from the new “Public Health Services and
Systems” category. In general, the budget forms appear to be straight forward since there is not a
requirement for grantees to break apart expenditures into different categories.

Sincerely,

V. Frances Tait, MD, FAAP
Associate Executive Director &
Director, Department of Child Health and
Wellness Implementation

Michelle Zajac Esquivel, MPH
Director, Division of Children with Special Needs
Director, National Center for Medical Home

1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

3333 Burnet Ave | MLC 4002 | Cincinnati, OH 45229­3039
 

 
 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Sharon Alexander 
To: HRSA Paperwork 
Cc: 
Date: Tue, 5 Jan 2016 22:01:52 +0000
Subject: Information Collection Request Title: Maternal and Child Health Bureau Performance Measures for
Discretionary Grants

Hello,
Thank you for the opportunity to provide comments on the Maternal and Child Health Bureau
Performance Measures for Discretionary Grants. Our comments are as follows (Also attached):
Overall Feedback
As performance measures evolve, it would be helpful to get a clear sense of what is expected of currently funded
grantees in transitioning the focus of their initiatives. For example, if grantees are asked to address the Life
Course Perspective and if that no longer is an emphasis for MCH leadership, knowing the expectations for if and
how quickly programs should reflect that change in focus is important. Additionally, staying true to the mission
and name of the Health Resources and Services and Administration, we feel strongly that the performance
measures also capture progress towards needed health resources in addition to services.
 
Measure:
Core 2: The percent of programs engaging in quality improvement and through what means, and related
outcomes.
 
Comments: We commend the wording of the Tier 4 measure regarding related outcomes as it allows
for demonstration of success using a combination of data sources and metrics.
 
Measure:
Core 3: The percentage of programs promoting and/ or facilitating improving health equity.
 
Comments: Health equity is extremely important but it looks different in different settings, especially
as it relates to genetic services. Disparate access to genetic services may be caused be lack of existing
services and service providers in a given area, not because of other socioeconomic or socially
https://mail.google.com/mail/u/0/?ui=2&ik=bd0a5c2415&view=pt&search=inbox&msg=15218640d04cee59&siml=15218640d04cee59

11/19

1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

determined barriers preventing access. Goals for health equity should account for other factors such as
availability of services.
 
In order to measure outcomes related to health equity objectives, we need sufficient benchmark data on
the target population. Currently, there is no population­based data on individuals with or at risk for
genetic conditions and this prevents grantees from understanding access issues, especially as they relate
to health equity and needed services.
 
Additionally, it’s important that this measure for improving health equity take into consideration the
fact that deciding to participate in health services, such as genetic testing, is driven in part by values and
cultural considerations. Therefore, measuring uptake of testing would not be a good indicator for
success towards health equity; instead, establishing objectives around education and activities to reduce
barriers (cost, not knowing how/where to get tested) for testing would be more indicative of success
towards this goal.
 
 
Proposed Table:
Table 1: Activity Data Collection Form for Selected Measures
 
Comments: We would like to see clearer definitions and more clarity for the segments outlined in the
chart. For example, what is included in the bucket of “State or National Agencies”? Does this mean all
statewide or national organizations, or is it meant to specify state or federal agencies, such as the
Agency for Healthcare Research and Quality? It would be helpful to have more clarity on this and what
is included in “Community Partners.”
 
            Consider including easily accessible definitions for each of these types of activities in the form
to improve consistency across grantees. Overall, Table 1 is a good way to get a national snapshot of
what is being done but it will not tell the full story of impact or benefit of programs, especially for
programs that do not provide direct services.
 
 
Measure:
CSHCN 1: The percent of programs promoting and/ or facilitating family engagement among children
and youth with special health care needs.
 
Comments: The way the Tier 1 measure is currently worded makes it unclear as to whether it is meant
to capture engagement of family members or engagement of children and youth with special health care
needs.
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1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
            Consider defining “meaningful participation” for Tier 4, measure 1.
 
The percentages calculated in Tier 4 will serve as helpful benchmark measures to determine any changes
in the future. However, without a sense from MCH leadership as to how many family and CSHCN
leaders there should be (or percentage of CSHCN population) the current numerators and denominators
do not indicate achievement nor need for improvement, only benchmark measures.
 
It’s important to point out that the target of many of our programs is individuals with genetic conditions
(and their families), who make up only a portion of the estimated population of children with special
health care needs (CSHCN). It is difficult to estimate and inaccurate for us to report our success towards
any of the CSHCN measures because our programs focus on genetic services and individuals with
genetic conditions, not the overall population of CSHCN.
 
Measure:
CSHCN 2: The percent of programs promoting and/ or facilitating medical home access and use among
children and youth with special health care needs.
 
Comments: Many of our programs focus on population health and determining individual level related
outcomes as in Tier 4 might not be possible or realistic. Clear expectations for related outcomes should
be specified at the outset of the program so that grantees that do not deliver direct services are not asked
to quantify outcomes on an individual level.
 
 

Sincerely,
Sharon
Sharon Alexander, MPA | Assistant Director of Strategic Health Initiatives
Genetic Alliance | 4301 Connecticut Ave NW Suite 404 | Washington DC 20008
202.966.5557x203| [email protected]
­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Alisha Keehn 
To: HRSA Paperwork 
Cc: Debbie Maiese , Michael Watson 
Date: Tue, 5 Jan 2016 21:57:00 +0000
Subject: Maternal and Child Health Bureau Performance Measures for Discretionary Grants Comments
To whom it may concern,
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13/19

January 5, 2016

HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
Re:

EMSC State Partnership Performance Measures (Maternal and Child Health Bureau
Discretionary Grant Information System (DGIS) Information Collection Request);
Federal Register/ Vol. 80, No. 215 / Friday, November 6, 2015

Dear Sir or Madam,
Illinois EMS for Children is forwarding the attached comments regarding the Maternal and Child
Health Bureau’s proposed revisions to the EMSC State Partnership performance measures (as
referenced above).
The Illinois EMS for Children program works to improve pediatric emergency care and disaster
preparedness within our state, and is supportive of the overall concepts within the proposed
performance measures. However there is a need to review the measures more carefully and
rework some of the detail in order to assure performance measures that are attainable, and that
are less likely to result in misinterpretation and potential collection of inconsistent data. In addition,
due to the variability of EMS services and systems from state to state and region to region, it is
important to recognize that multiple methods may be valid in achieving the same measure.
We encourage the Maternal and Child Health Bureau to review the suggestions on the following
pages (as well as all of the comments regarding these EMSC PMs) and take them under
consideration prior to finalizing the performance measures.
We are appreciative of the opportunity to provide comment on these proposed performance
measures. If you should have any questions, feel free to contact me at (708) 327-2556 or
[email protected].

Sincerely,

Evelyn Lyons, RN, MPH
EMSC Manager
Illinois Department of Public Health

EMSC Proposed Performance Measure 1:
The degree to which EMS agencies submit NEMSIS compliant version 3.x data to the State EMS
office for submission to NEMSIS Technical Assistance Center (TAC).
Comment:

Recommend eliminating this measure since it is not pediatric specific.

Access to data is recognized as an essential EMS System component in order to obtain a better
understanding of patient populations and resource utilization/needs as well as identifying trends,
educational needs and opportunities for improvement. However this proposed measure implies
that State EMSC programs have responsibility for their state EMS data. In fact, this activity falls
outside the authority of State EMSC programs, and would be better tasked to the entities directly
responsible for EMS data at the state and national levels. State EMSC programs should certainly
support data initiatives - for example there is currently an EMS Compass initiative which is working
to develop overarching EMS performance measures based on the latest version of the National
EMS Information System (NEMSIS) and will allow local and state EMS systems to use their own
data meaningfully. In addition, it’s very important to understand that the funding provided to state
partnership grantees is limited, and therefore should be used to primarily target performance
measures with clear applicability to the pediatric community.

EMSC Proposed Performance Measure 2:
The percentage of EMS agencies in the state/territory that have a designated individual who
coordinates pediatric emergency care.
Comment: Recommend clarifying the definition of a “designated individual” and revising
the detail sheet to allow flexibility in the achievement of this performance measure.
1. Healthcare organizations can benefit from access to a pediatric emergency care coordinator
who works to assure the inclusion of pediatric considerations into clinical care, protocol
development, education/training and quality initiatives. Larger EMS agencies will likely have
the ability to meet this measure, however mandating this requirement at the local EMS agency
level will create challenges for small, rural volunteer agencies who at times have difficulty
retaining adequate staff to provide 24 hour coverage. This performance measure should allow
for pediatric coordinators at the EMS Regional or EMS System level (who have direct contact
with their local EMS agencies). This regional approach reflects the type of infrastructure that
already exists in many states, in which education/training, protocol development, quality
oversight and other activities are coordinated at the EMS Region or EMS System level.
2. It is unclear as to whether the survey questions on page 108 of the data collection form for this
measure are examples only. These questions identify specific responsibilities of the
coordinator, and it could be misconstrued that all of these questions must be answered in the
affirmative in order to achieve a score of “3” for this measure (Score of 3 = “Our EMS agency
HAS a designated INDIVIDUAL who coordinates pediatric emergency care”). The list should
emphasize that it contains examples of potential (not required) responsibilities. This clarification
will decrease the potential for misinterpretation, resulting in more accurate data.
3. Recommend revisiting the list of coordinator responsibilities on page 108 as follows:
 Change “pediatric clinical practice guidelines” to “EMS pediatric clinical practice
guidelines/protocols”, since most EMS agencies utilize the term “EMS protocols”. In
addition, “protocols” is used in the first question on page 108 so this change will ensure
consistency in language.
 Clarify “pediatric process improvement” by changing to “pediatric quality improvement” (or
similar language) to avoid misinterpretation.

EMSC Proposedd Performance Measure 3:
The percentage of EMS agencies in the state/territory that have a process that requires EMS
providers to physically demonstrate the correct use of pediatric specific equipment.
Comment: Strongly recommend revising this measure since it lends to widely variable
interpretation, which can result in inconsistent reporting.
This performance measure needs clarification since it can be interpreted in a variety of ways, thus
likely resulting in inconsistent and/or unreliable reporting. Recommend the following:
 Develop a clear definition of the word “process”.
 Define examples of specific skills/equipment, utilizing the ABCs as a framework.
 Clarify the qualifications/credentialing of the individuals evaluating the skill/equipment use.
 Revisit the rubric to assure a consistent interpretation (provide examples).
 Change the defined achievement score to “6 or higher” on a 0 – 12 scale (currently a score
of 8 or higher is needed to meet achievement). This change takes into account that field
encounters are less realistic or achievable for many providers, particularly small volume
agencies.
 Allow the skills demonstrations within standardized courses (such as PALS, PEPP, APLS
and ENPC) and the use of the National Registry of EMT’s Continued Competency Program
(CCP) to meet the skill station component in the scoring rubric.

EMSC Performance Measure 4 (current PM 74):
The percent of hospitals with an Emergency Department (ED) recognized through a statewide,
territorial or regional standardized system that are able to stabilize and/or manage pediatric
medical emergencies.
Comment: Recommend exploring strategies to assist more states in attaining
achievement of this measure.
EMSC Performance Measure #74 remains a challenging measure, however achievement lends to
innumerable benefits within a state and enhances the pediatric emergency/critical care
infrastructure. A core benefit of a tiered recognition system is the resultant collaborative efforts
and cross-institutional work. For example, small community hospitals lacking the resources to truly
invest in pediatric quality improvement initiatives can benefit from the collaboration with pediatric
tertiary care centers, through a pediatric facility recognition process. Recommend a steadfast
exploration of strategies and commitment of resources to assist more states in attaining this
performance measure.

12/17/2015

JSI/WEI/PFSCM Mail ­ Fwd: Public Comment on Proposed Performance Measures

 

 
 

From: HRSA Paperwork 
Sent: Monday, December 14, 2015 2:28 PM
To: Resnick, James (HRSA)
Cc: HRSA Paperwork; Wright­Solomon, Lisa (HRSA)
Subject: FW: Public Comment on Proposed Performance Measures
 

Hi Jaime, your first comments on DGIS! 
 
Ellie
 
From: Thomas Winkler [mailto:[email protected]] 
Sent: Friday, December 11, 2015 4:03 PM
To: HRSA Paperwork
Subject: Public Comment on Proposed Performance Measures
 

The following comments apply to the Emergency Medical Services for Children Program within
the Division of Child Adolescent, and Family Health to the proposed Performance Measures.
 
Overall, we are very supportive of the proposed measures and the overarching goals each of
them seek to achieve.  That stated, we have concerns with some of the details included in each
of the three new proposed PMs and have included specific comments below.
 
EMSC 01
While we fully support the utilization of and reporting to NEMSIS, we are concerned with the
specific language in this PM.  The Commonwealth of Pennsylvania currently does not have the
resources to move our data to NEMSIS 3.x and will be remaining on NEMSIS 2 compliant data for
the short‐term future.  There is currently no plan and no time line to advance our NEMSIS data
collection to make it NEMSIS 3.x compliant.  As Pennsylvania has ~1,000 ambulance services
reporting data, this transfer will be incredibly time and resource consuming, and Pennsylvania’s
capacity at this time is not sufficient to support such a transfer.  Therefore, we have grave
concern that the current language of this PM which requires submission of “NEMSIS complaint
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12/17/2015

JSI/WEI/PFSCM Mail ­ Fwd: Public Comment on Proposed Performance Measures

version 3.x data” will not be achievable by the PA EMSC Program.
We suggest rewording this PM to make the PM broader by striking the words “version 3.x” and
wording this PM as follows: “The degree to which EMS agencies submit NEMSIS compliant
data...”.  As a majority of states and territories in the United States currently are not able to
submit NEMSIS 3.x compliant data, we believe this change would be beneficial to a significant
portion of grantees within the overall EMSC SP grant program.
 
EMSC 02
We support the development of a designated position at an EMS agency to improve pediatric
emergency medical care.  However, we have multiple concerns with this PM in its current
form.  We are significantly concerned about the current definition of an “EMS agency”.  The
Commonwealth of Pennsylvania does not have any designation as to whether or not an EMS
agency responds to emergency calls.  Additionally, Pennsylvania licenses non‐transporting Quick
Response Services that provide lower level EMS care designed to get an EMS provider to the
scene more quickly than an ambulance could arrive to the scene.  Therefore, the current
definition, when applied to Pennsylvania, covers approximately 1,600 different EMS agencies,
making surveying and logistical considerations for this PM a significant and perhaps unattainable
challenge.  Current estimates suggest that there are >10% non‐emergency transport‐only EMS
agencies in Pennsylvania, very few of which EVER see a pediatric patient and will be very
resistant to implementing such a program.  In addition, many of our rural EMS agencies are
mostly/totally volunteer services, and have extreme difficulty providing even minimal staffing
for their ambulances.  Adding additional requirements on these agencies that already have
incredibly limited resources would not be received well and could result in political struggles for
the program.
We suggest amending this PM to reference specifically to EMS agencies that respond to
emergency calls and are transport‐capable.  We believe these EMS agencies are the ones who a)
will benefit the most from an EMS agency PECC and b) will be the most willing to comply with
the creation of such a position.  In addition, we believe this PM will require significant support
from both HRSA and the soon‐to‐be awarded EIIC to help make this proposed PM become a
reality.
 
EMSC 03
We fully support the verification that EMS providers are able to use pediatric‐specific equipment
on pediatric patients.  That said, we severely disagree with the metrics used for evaluation
suggested in this proposed PM.  There is an ongoing shortage of EMS personnel in Pennsylvania,
with ever growing demand on the EMS system and limited increases in the number of providers,
so to be able to perform evaluations via field encounters would be not possible given the current
political and social environment.  Therefore, we suggest the full removal of that portion of the
PM.  We also worry that requiring skills stations and/or case scenarios twice or more per year
would be very difficult for EMS agencies to manage, especially our large agencies with
significant numbers of personnel.  We believe lowering this number to once per year, at a
maximum, would be much more attainable.  Many of our ALS agencies already require their ALS
practitioners to complete annual skills reviews, allowing this PM to be added to those
requirements.  As with EMSC 02, we worry that the volunteers will feel like an undue burden has
been placed on them, and worry about the political implications associated with that issue. 
 
EMSC 04‐07, 09
We thank HRSA for extending the deadlines related to each of these PMs.  We have no further
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12/17/2015

JSI/WEI/PFSCM Mail ­ Fwd: Public Comment on Proposed Performance Measures

comments on these PMs.
 
EMSC 08
We have no comments on this PM.
 
These comments are submitted on behalf of the Pennsylvania Emergency Health Services Council
and were written by the EMS for Children Program Manager for Pennsylvania.  Any comments,
questions, or concerns should be directed to myself by using the contact information in my
signature below.  Thank you for your consideration of our comments and on behalf of all of the
staff here at the Council I wish you a safe and happy holiday season.
 
Warmest regards,
 
Tom Winkler
EMS for Children Project Director
Pennsylvania Emergency Health Services Council
600 Wilson Lane, Suite 101
Mechanicsburg, PA 17055
Phone: (717) 795‐0740|Ext. 118
Fax: (717) 795‐0741
[email protected]
 
Need pediatric con‐ed?  The Pediatric Symposium Webinar Series offers easy access to
free, high‐quality pediatric‐specific education. For more info, visit
www.paemsc.org/education
 

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Landon State Office Building
900 SW Jackson Street, Room 1031
Topeka, KS 66612-1228

Board of
Emergency Medical Services

Dr. Joel E Hornung, Chair
Joseph House, Executive Director

phone: 785-296-7296
fax: 785-296-6212
www.ksbems.org
Sam Brownback, Governor

January 4, 2016
HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
To Whom It May Concern –
These comments are in response to the notice published within the Federal Register on
November 6, 2015 in regards to the “Maternal and Child Health Bureau Performance Measures
for Discretionary Grants.”
The Kansas Board of Emergency Medical Services is the State EMS Office as well as the
regulatory agency that is responsible for the oversight of EMS within the state of Kansas. We
work in very close collaboration with the EMS for Children program to ensure that prehospital
emergency medical care for the pediatric population is appropriately addressed. The EMS for
Children program has 3 new performance measures listed within this document that, as currently
written, will cause difficulty for the program to effect any change within our state.
We appreciate the thought that went into each of the new performance measures and believe that
they are well intended; unfortunately, we believe that the goals established are also unattainable
and unrealistic. We believe that each of these not only place an undue burden upon the EMS for
Children program, but also an undue burden on the ambulance services within our state that have
limited resources and personnel. We have listed our comments for each of the 3 new
Performance Measures below as well as overall comments consistent with all 3:
EMSC 01 – Submission of NEMSIS compliant version 3.x data
The state of Kansas currently provides a cost-free electronic PCR solution, utilizing a NEMSIS
v3.x compliant vendor, as well as a statutory mandate of reporting electronic patient care data
into this system. Even with both of these items, we still have a significant percentage of
ambulance services that do not submit data into this system. We believe that this performance
measure falls outside the scope of the EMS for Children grant. However, it could be altered to
address a percentage of pediatric calls submitted rather than a percentage of services submitting
data.
EMSC 02 – Pediatric Emergency Care Coordination
The ability for all ambulance services to be able to designate a single person that is responsible
for the coordination of pediatric emergency care for the service is a great concept when resources
are plentiful. However, in ambulance services with a limited number of responders and
personnel, having 1 person designated as being responsible for the level of coordination being
gauged by this performance measure is unrealistic. We also believe that this contradicts a
regionalized approach to care. We believe that this performance measure could be altered to
reflect upon regions within a state rather than individual services. A regional approach to

pediatric process improvement, pediatric continuing education opportunities, etc. provides for
increased access to “experts” within pediatrics rather than an individual tasked with being the
expert.
EMSC 03 – Use of pediatric specific equipment
We appreciate the effort to ensure that pediatric specific equipment is utilized appropriately and
that training for each of the pediatric specific devices is adequate. Our statutes also address
being able to provide care with equipment and medications for which the provider has
demonstrated his/her competency to utilize. Requiring or requesting an ambulance service to
maintain a potentially different method of documenting competency is a burden to the
ambulance service. We believe that this performance measure would be better addressed by
remaining focused on building aspects of regional centers of pediatric excellence. For many of
our ambulance services, the expectation that an EMS provider will be able to provide care to a
pediatric patient in the “field” is minimal. Pediatric calls account for approximately 7% of the
total calls in Kansas (as reported within our State EMS Information System). Ensuring that each
provider is able to provide field care on a pediatric patient within a 2 year period is an
impractical burden to ambulance services. However, building a “regional center” with the ability
to provide simulated patient scenarios in conjunction with pediatric training sessions may better
meet the strategic objective of this measure.
Overall Comments
In each of the definitions, an EMS agency includes transporting and non-transporting agencies as
well as excludes those services that only respond in air or on water. In the state of Kansas and in
some other states, non-transporting agencies fall outside the jurisdiction of the state regulatory
entity – even though the licensure/certification of their personnel is within that jurisdiction. We
also believe that if the desire is to have an all-encompassing view of prehospital care, then those
air and water-only EMS services should also be included.
We are very appreciative of HRSA wishing to find ways of automated collection techniques to
minimize the information collection burden. We feel that this will prove to be a more efficient
method of timely analysis.
We appreciate the ability to enter comment upon these performance measures and upon the
Information Collection Request. If you require any further explanation or this prompts any
questions, please do not hesitate to contact me. Thank you for your time and consideration of
these comments.
Sincerely,

Joseph House, Paramedic
Executive Director
Email: [email protected]

1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
Join the Family Voices One­in­Five Awareness Campaign.

  

  

  

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "Smith, Jennifer" 
To: HRSA Paperwork 
Cc: 
Date: Tue, 5 Jan 2016 23:41:13 +0000
Subject: DGIS PM comments
Hello,
 
Please see feedback/comments regarding Performance Measures below:
 
CORE:
 
CORE 1:                Yes/No format will make it challenging for programs to demonstrate when
they have only met parts of an objective. Will there be an open ended dialogue box for
comments or discussions regarding changes to objectives throughout the 5­year cycle?
 
CORE 2:                Tier 2 – Can multiple aims be checked? It would be helpful to also have
more detail regarding each of these options (such as examples)
                                Tier 3 – Will programs be sharing what type of training they
received/who provided the training so information can be shared with other programs
interested in QI?
 
Capacity Building:
 
CB 2:                      There are 2 rows for Depression Screening/Screening for Major
Depressive Disorder. There are no content areas related specifically to developmental
disabilities.
 
CB 4:                      Tier 3 is confusing. How would this be measured?
 
CB 5/6:                  This seems to overlap with data that is captured in other areas regarding
products/activities.
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1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
CSHCN:
 
CSHCN 2/3:         Tier 3: What is the difference between # trained and # educated/receiving
information? Also, there is likely to be duplication within those reached (same person could
attend multiple trainings and be counted multiple times), thus skewing the data.
 
Training:
 
Training 6:           The omission of the 10 year follow­up is a concern. While it has historically
been difficult to track individuals 10 years after completion of the program, this data seems
crucial. 5 years does not seem like enough time for leaders to fully grow and develop using
the outcomes that we are measuring them on.
 
Training 8:           Thank you for adding the examples of other MCH­funded and related
programs – that is very helpful!
 
Training 9:           We like the list of interdisciplinary skills. Is there a reason why 10­year
follow­up is included in this PM and not PM Training #6?
 
Training 12:         Again, is there a reason why 10 year follow­up is not included here?
 
Please let us know if you have any questions.
Thank you.
 

Jennifer (Bass) Smith, PsyD, BCBA­D | Licensed Clinical Psychologist 
Assistant Professor of Clinical Pediatrics
Program Director, Leadership Education in
Neurodevelopmental and related Disabilities (LEND) Program
The Kelly O’Leary Center for Autism Spectrum Disorders
Community Outreach Coordinator
 
Division of Developmental & Behavioral Pediatrics
Office 513.803.2365 | [email protected]
Leadership Education in Neurodevelopmental and related Disabilities (LEND) program
Cincinnati Children’s Hospital Medical Center
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10/19

1/7/2016

JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

 
 
From: HRSA Paperwork 
Sent: Wednesday, January 06, 2016 12:08 PM
To: Resnick, James (HRSA); Leitch, Anne (HRSA)
Cc: HRSA Paperwork; Wright­Solomon, Lisa (HRSA)
Subject: 17 of 34 comments on DGIS ­ email 1 of 2
 
 
 

Ellie Bowman
DHHS/HRSA/OA/OPAE/OD
5600 Fishers Lane, Rm. 14N136B
Rockville, MD  20857
301­443­3983 (Main)
301­443­9362 (personal)
301­443­3828 (fax)

 
 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Lisa Gorman 
To: HRSA Paperwork 
Cc: 
Date: Wed, 6 Jan 2016 15:08:03 +0000
Subject: Federal Register /Vol. 80, No. 215
Region 4 Midwest Genetics Collaborative, funded by the Health Resources and Services Administration
(HRSA) Maternal and Child Health Bureau, Genetics Services Branch. Clinicians, families, public health, and
laboratories from seven states work collaborative to ensure not only that newborns receive screening and
follow­up, but that all children and youth with heritable disorders have access to genetic expertise and
coordinated care in the context of a medical home.
 
The regional collaborative currently uses HRSA Performance Measure #41 and questions from the National
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Survey of Children’s Health (NSCH) to assess its contributions to Healthy People 2020 objectives. This effort
will be strengthened by the addition of several measures in the DGIS, but only if the NSCH retains the
question that is currently in field tests that asks whether the respondent “Has a doctor or other health care
provider EVER told you that this child has... Genetic or inherited condition (response A16)”.  The addition of a
heritable condition response category will give MCH constituents, other survey users, and the MCH Genetics
Services Branch critical information by which to analyze variables in the NSCH to report on DGIS measures. 
And if the respondent were asked to specify the genetic condition formatted similarly to A27 Other Mental
Health Condition, then even more information would be available to characterize the genetic conditions.
 
Region 4 Midwest piloted a similar question in addition to use of the NSCH with a sample of 190 parents who
participated in one of our trainings, Care Coordination: Empowering Families. We recruited families of children
with a heritable condition. Family participants represented children with medically complex conditions with a
mean of 2.4 health conditions and 1.4 developmental conditions (see table below for specification). By better
identifying the health condition of those children not meeting HRSA core outcomes, grantees can target
resources to improve access and health outcomes.
 
In addition, to having national population estimates of children with heritable conditions, the DGIS measures
could be strengthened by making the following revisions:
 
Measure

Region 4 Midwest Genetics Collaborative Recommendation

PIH 3

We applaud the State’s newborn screening programs and the identification and follow­up
testing saving thousands of lives each year.  However, there is no current mechanism for
tracking nationally what happens to these children once they have been referred to the
physician of record.

CSHCN 1

Add Tracking and Monitoring to Tier 2 to emphasize the importance of data collection
around family engagement.  Meaningful participation should be defined.
 
Add regional to the geographic units included in Tier 4.  This addition would recognize that
some activities can be more efficiently achieved on a regional basis.

CSHCN 2

Table 1 is to be used to report activities.  It would be helpful to clarify where local public
health activities should be counted. We recommend that HRSA distinguish between
governmental and non­governmental partnerships.
 
Tier 4 could be enhanced by including other performance measures, e.g. improving care
coordination with specialists. 

LC 1

Add Tracking and Monitoring to Tier 2 to emphasize the importance of data collection
around health insurance coverage.   Similarly, add Tracking and Monitoring to the LC1
Data Collection form.
In Tier 4, it would be helpful to provide a definition for adequate health insurance coverage.

 
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JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

Region 4 Midwest noted that even though only 1.6% and 1.3% of training participants were uninsured, 37.4%
and 53.8% of all participants had adequate insurance to pay for the services they need. These findings
suggest that insurance coverage does not equate adequate coverage for medical needs.
 
 
Measure

Region 4 Midwest Genetics Collaborative Recommendation

CB 1   

In Tier 3, the list of State agencies should separate Newborn Screening (NBS) from
Genetics as each is an important partner to HRSA/MCHB.   Because HRSA has begun to
emphasize genetics across the lifespan, it is critical to create distinct categories for NBS
and Genetics.  Through this ontology, we believe that HRSA will have additional insights
about the extent to which genetics is being addressed by its grantees.  

 

 
Again, from a small sample of those we served we learned that the mean age of diagnosis was 1.8 (SD= 2.5)
years with a range age of diagnosis from 0­12.
 
Measure

Region 4 Midwest Genetics Collaborative Recommendation

CB 2

Genetics is missing from the list of MCH priorities.  Genetics should be added to Tier 3
and to the Data Collection Form for CB2.
 

CB 3

This is an opportunity to ask grantees about the State and national data sources that they
are using to assess their activities and impact.  It could give data HRSA data on the use
of the National Survey of Children’s Health, birth defects registries, etc.  This data would
help support the importance taxpayers’ investment in these State and national data
resources.
 
Impact should be defined in Tier 1, 2, and 4  

CB 6

Tier 3 should also include some measure of use of these products.  The NCC/RC system
uses number of unique visits and home page visits to measure the use of its Internet
resources.  Impact factors of publications might be another metric to consider.
Web based products should be categorized for data collection.  Web­based products vary
greatly in their reach and it would be helpful to collect this at a national level.  Particularly
as we move towards the future and most products/outreach is taking place through the
internet.
 

Core 2

We applaud HRSA for recognizing cross­sectorial collaborative across multiple
organizations in Tier 2.   We suggest that an additional aim of this type of collaboration
might be improved coordination across MCHB­funded programs.

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Table 1

Add Tracking and Monitoring as a new row.  Data collection and analysis is sufficiently
distinct from quality improvement to warrant its own row. 
 
As indicated in our comments on CSHCN 1, we recommend that HRSA distinguish
between governmental and non­governmental partnerships in the column headings.

 
Thank you for the opportunity to comment on these proposed measures.  We stand ready to use them in
reporting on our HRSA grant.

 
 
 
Lisa Gorman, Ph.D.
Senior Research Scientist
Michigan Public Health Institute
2440 Woodlake Circle, Suite 100
Okemos, MI 48864
 
Tel: (517) 324­7398
Cell: (517) 898­7563
Fax:  (517) 324­6027
 
 

 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "Phillippi, Rhonda" 
To: HRSA Paperwork 
Cc: 
Date: Wed, 6 Jan 2016 05:11:51 +0000
Subject: Re: EMSC State Partnership performance measures (part of the Maternal and Child Health Bureau
Discretional Grant Information System (DGIS) Information Collection Request); Federal Register/ Vol. 80, No.
215 / Friday, November 6, 2015
Please find the attached

Tennessee's response to EMSC State Partnership performance measures (part of the Maternal and Child
Health Bureau Discretional Grant Information System (DGIS) Information Collection Request);  Federal
Register/ Vol. 80, No. 215 / Friday, November 6, 2015
 
 

 

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!
The!Mountain!States!Genetics!Regional!Collaborative!(MSGRC)!is!one!of!seven!regional!collaboratives!
covering!the!nation.!The!MSGRC!covers!an!8!state!region!that!includes!Arizona,!Colorado,!Montana,!
Nevada,!New!Mexico,!Texas,!Utah!and!Wyoming.!The!regional!collaboratives!and!the!National!
Coordinating!Center!(NCC)!of!the!American!College!of!Genetics!and!Genomics!(ACMGG)!are!federally!
funded!through!the!U.S.!Department!of!Health!and!Human!Services,!Health!Resources!and!Services!
Administration!(HRSA),!Genetic!Services!Branch.!The!MSGRC’s!mission!is!to!ensure!that!families!and!
individuals!affected!by!genetic!conditions!have!improved!access!to!direct!and!support!services!through!
the!development!of!infrastructure!for!both!public!health!partners!and!clinical!providers.!Addition!of!
several!measures!in!the!DGIS!will!increase!the!ability!of!MSGRC!and!the!other!RCs!to!best!serve!this!
population.!
!
Please!refer!to!the!table!below!for!MSGRC’s!comment!on!the!DGIS!measures,!including!input!on!the!
pertinence!and!attainability!of!these!particular!measure!without!the!Region!and!across!the!Regional!
Collaborative!program:!
!
Measure!
MSGRC!Recommendation!!
PIH!3!
Add!facilitation!of!collaboration!between!states!to!Tier!2.!Members!of!the!MSGRC,!
specifically!those!in!the!Newborn!Screening!Workgroup,!have!previously!played!a!role!
on!specific!issues!such!as!emergency!preparedness.!!Outcome!measures!as!suggested!in!
Tier!4!will!only!be!obtainable!with!state!and!other!partnerships.!!!
CSHCN!1U3! Keep!Tier!2!points!on!processes!and!mechanisms!being!promoted!for!considering!
projects!and!their!outcome!measures.!Add!facilitation!of!collaboration!to!Tier!2!
measures!to!emphasize!the!importance!of!partnerships!with!other!organizations!and!
MCHB!funded!programs!around!consumer!engagement,!medical!home!and!transition.!!
!
Tier!4!points!on!“training”!and!measurable!links!to!be!medical!home!should!be!
incorporated!into!work!plans!and!are!attainable!measures!for!both!the!MSGRC!and!
NCC.!
LC!1!!
Add!facilitation!of!collaboration!to!Tier!2.!Regional!collaboratives!have!partnered!with!
each!other!and!other!organizations!to!review!existing!gaps!and!needs!around!health!
insurance!coverage.!!The!outcome!measures!in!tier!4!will!be!difficult!for!the!RCs!to!
measure!without!such!collaboration.!!!
CB!1!!!!!
Tier!2!measures!(delivery!of!training!programs,!support!of!state!strategic!planning!
!
activities,!provide!expertise!on!priority!topics,!and!facilitate!state!level!partnerships)!
could!be!developed!further!for!RCs.!
CB!2!
Technical!assistance!has!been!a!focal!discussion!point!for!NCC!and!the!RCs!and!is!an!
activity!that!can!be!achieved!by!MSGRC.!“Genetics!technical!assistance”!should!be!
added!as!an!additional!topic!to!Tier!3.!
!
CB!4U6!
CB!4!(program!sustainability)!and!5!(production!of!scientific!publications)!are!feasible!
measures.!PeerUreviewed!publications!should!be!included!in!Tier!2!measures.!CB6!is!
currently!being!accomplished!by!MSGRC.!All!of!these!measures!should!be!considered!as!
a!potential!focus!for!the!RCs.!
!
Core!1U3!!
Core!1!(meeting!stated!aims)!and!2!(QI!and!outcome!measurement)!are!both!attainable!
for!grantees.!Necessitates!more!QA!and!QI!to!be!integrated!into!program.!Core!3!is!

(equity)!also!an!appropriate!as!a!goal!of!ensuring!all!individuals!have!improved!access!to!
genetic!services,!information,!and!expertise.!MSGRC!has!focused!on!underserved!
populations!in!region!in!past.!!
!!

Training!!
1U2!

Achievable!and!currently!being!sustained!through!MSGRC’s!engagement!of!consumer!
advocates!and!our!involvement!with!and!emphasis!on!underserved!populations.!!This!
should!be!considered!a!strength!of!the!regional!collaborative!model.!
!
!

!
Thank!you!for!the!opportunity!to!comment!on!these!proposed!measures.!!We!stand!ready!to!use!them!
in!reporting!on!our!HRSA!grant.!!
!
!!

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January 5, 2016
To whom it may concern,

To ensure access to quality genetic services, the Health Resources and Services Administration (HRSA)
Maternal and Child Health Bureau, Genetics Services Branch funds a National Coordinating Center (NCC)
at the ACMG, a National Genetic Education and Consumer Network at the Genetic Alliance, and seven
Regional Genetic Service Collaboratives (RCs). This NCC/RC system has a mission to develop national
infrastructure for public health and clinical providers to address gaps and improve direct and enabling
services for families and individuals affected by genetic conditions.
Each year, approximately 4.2 million newborns are screened for genetic diseases. The American College
of Medical Genetics and Genomics (ACMG) estimates that about 12,500 babies will be identified with a
newborn screening condition each year. With follow-up services and treatment, most of these babies
will lead healthy lives.
In its national evaluation, the NCC/RC system currently uses HRSA Performance Measure #41 and
questions from the National Survey of Children’s Health (NSCH) to assess its contributions to Healthy
People 2020 objectives. This effort will be strengthened by the addition of several measures in the DGIS,
but only if the NSCH retains the question that is currently in field tests that asks whether the respondent
“Has a doctor or other health care provider EVER told you that this child has... Genetic or inherited
condition (response A16)”. The addition of a heritable condition response category will give MCH
constituents, other survey users, and the MCH Genetics Services Branch critical information by which to
analyze variables in the NSCH to report on DGIS measures. And if the respondent were asked to specify
the genetic condition formatted similarly to A27 Other Mental Health Condition, then even more
information would be available to characterize the genetic conditions.
In addition, to having national population estimates of children with heritable conditions, the DGIS
measures could be strengthened by making the following revisions:
Measure
CSHCN 1

ACMG Recommendation
Add Tracking and Monitoring to Tier 2 to emphasize the importance of data collection
around family engagement.
Add regional to the geographic units included in Tier 4. This addition would recognize
that some activities can be more efficiently achieved on a regional basis.
While desirable to have racial and ethnic data on family CSHCN leaders, how feasible is
it to obtain this information? Perhaps collecting data to show that affected individuals
and families are engaged as CSHCN leaders would be easier to report.

CSHCN 2

Table 1 is to be used to report activities. It would be helpful to clarify where local public
health activities should be counted. As currently constructed this table has the columns

7220 Wisconsin Ave Suite 300 • Bethesda, MD, 20814•301.718.9603•www.nccrcg.org

of Community Partners separate from State and National. We recommend that HRSA
distinguish between governmental and non-governmental partnerships.
Tier 4 could be enhanced by including other performance measures, e.g., promoting a
framework for medical home, increasing the number of medical homes, or improving
care coordination with specialists.
Add Tracking and Monitoring to Tier 2 to emphasize the importance of data collection
around health insurance coverage. Similarly, add Tracking and Monitoring to the LC1
Data Collection form.

LC 1

In Tier 4, it would be helpful to provide a definition for adequate health insurance
coverage.
In Tier 3, the list of State agencies should separate Newborn Screening (NBS) from
Genetics as each is an important partner to HRSA/MCHB. Because HRSA has begun to
emphasize genetics across the lifespan, it is critical to create distinct categories for NBS
and Genetics. Through this ontology, we believe that HRSA will have additional insights
about the extent to which genetics is being addressed by its grantees.
Genetics is missing from the list of MCH priorities. Genetics should be added to Tier 3
and to the Data Collection Form for CB2.

CB 1

CB 2

As currently constructed the Data Collection Form for CB2 has the columns of
Community/Local Partners separate from State or National Partners. We recommend
that HRSA distinguish between governmental and non-governmental partnerships.
The definition of Technical Assistance is well done. We applaud HRSA for recognizing
that this is a collaborative activity that can be done on a regional basis.
CB 3

This is an opportunity to ask grantees about the State and national data sources that
they are using to assess their activities and impact. It could give data HRSA data on the
use of the National Survey of Children’s Health, birth defects registries, etc. This data
would help support the importance taxpayers’ investment in these State and national
data resources.

CB 6

Tier 3 should also include some measure of use of these products. The NCC/RC system
uses number of unique visits and home page visits to measure the use of its Internet
resources. Impact factors of publications might be another metric to consider.

Core 2

We applaud HRSA for recognizing cross-sectorial collaborative across multiple
organizations in Tier 2. We suggest that an additional aim of this type of collaboration
might be improved coordination across MCHB-funded programs.

Table 1

Add Tracking and Monitoring as a new row. Data collection and analysis is sufficiently
distinct from quality improvement to warrant its own row.
As indicated in our comments on CSHCN 1, we recommend that HRSA distinguish
between governmental and non-governmental partnerships in the column headings.

7220 Wisconsin Ave Suite 300 • Bethesda, MD, 20814•301.718.9603•www.nccrcg.org

Thank you for the opportunity to comment on these proposed measures. We stand ready to use them
in reporting on our HRSA grant.
Sincerely,

Alisha Keehn, MPA
Project Manager, NCC
ACMG

7220 Wisconsin Ave Suite 300 • Bethesda, MD, 20814•301.718.9603•www.nccrcg.org

Emergency Medical Services for Children State Partnership Program

New England Region
Region Lead: Stephanie Busch
108 Cherry Street – PO Box 70
Burlington, VT 05402-0070
[email protected]

[phone] 802-863-7313
[fax] 802-863-7577

TO: HRSA Information Collection Clearance Officer
FROM: New England Region EMS for Children (EMSC) State Partnership Program Managers
(Connecticut, Massachusetts, New Hampshire, Rhode Island, Vermont)
RE: Public Comment on proposed EMSC Performance Measures #’s 01, 02, 03
We respectfully submit our feedback on the above-listed performance measures.
Thank you for the opportunity to comment on these proposed performance measures. If you
have any questions about our comments, feel free to contact Stephanie Busch.

PM 01: The degree to which EMS agencies submit NEMSIS-compliant version 3.x data to the
state EMS office for submission to NEMSIS Technical Assistance Center (TAC)
Comments:
• The proposed performance measure is not pediatric-specific. We acknowledge that
current, accurate data is essential to understand patient-care trends and opportunities
for improvement, however in general state EMSC programs are unable to influence the
data-collecting responsibilities of state EMS offices for 9-1-1 activations.
•

Funding or state data-privacy issues will affect a state’s ability to meet or move
towards this measure. This measure description cites 9-1-1 EMS activations but uses
the numbers of EMS agencies within the state as numerator/denominator. Rural or
volunteer agencies may experience greater resource limitations preventing them from
submitting data to state EMS offices. In states with high numbers of rural/volunteer
agencies it might appear that a state is not making effort towards the established
benchmarks. A more accurate reflection might be gained by measuring the percentage
of 9-1-1 response data (numerator) in relationship to the total estimated 9-1-1
statewide volume (denominator).

•

The EMS COMPASS Project includes proposed performance measures for agencies,
including data collection and use. We recommend that COMPASS, funded by NHTSA,
will provide more appropriate opportunity to measure this information.

PM 02: The percentage of EMS agencies in the state/territory that have a designated
individual who coordinates pediatric emergency care

Emergency Medical Services for Children State Partnership Program

New England Region
Region Lead: Stephanie Busch
108 Cherry Street – PO Box 70
Burlington, VT 05402-0070
[email protected]

[phone] 802-863-7313
[fax] 802-863-7577

Statement:
The mission of the EMSC Program is to ensure that all children receive the best and most
appropriate care in emergencies. As such we applaud the concept of a ‘pediatric coordinator’
for EMS agencies. We work closely with EMS agencies in our states, and we find that within
each state our EMS systems vary greatly based on provider certification levels, scope of
practice, local/state medical direction, pre-hospital protocols, population densities, regional
geographic and economic conditions, as well as other factors.
Comments:
• Agencies require flexibility in meeting or working towards this performance measure.
Staffing, union requirements, funding, or availability of pediatric expertise are only some
of the factors that will enter into an agency’s ability to assure the availability of a
pediatric coordinator
•

We recommend that flexible options are provided to assist all agencies in achieving this
goal. Such options could include sharing of a pediatric coordinator among several
agencies or on a regional basis, especially for rural/volunteer agencies.

•

The wording in the survey question description is vague and may be interpreted by the
reader/responder to mean that most or all of the possible coordinator activities must
exist in order to achieve a ‘yes’ response (i.e. that the agency has a pediatric
coordinator).
o We recommend that the preliminary wording be changed to:
“…by DESIGNATING AN INDIVIDUAL who is responsible for ONE or MORE of the
following activities:”
o We recommend that the following be added to the list of provided possible
activities:
“Promote the adoption of family-centered care policies’
“Promote agency participation in pediatric injury prevention
programs/collaborations”
“Promote awareness of pediatric-specific clinical guidelines/protocols

•

The proposed survey question also includes language regarding the role of the pediatric
coordinator in the development of EMS protocols. In many states this would never be
the role of an agency-level coordinator, as it is handled at a higher level. The ‘pediatric
representative’ that is embedded within the state’s EMS medical advisory board,
(reference existing EMSC performance measure 79) and/or the EMSC advisory
committee, holds the responsibility for input on pediatric protocol development. We
recommend that the referenced language be removed.

Emergency Medical Services for Children State Partnership Program

New England Region
Region Lead: Stephanie Busch
108 Cherry Street – PO Box 70
Burlington, VT 05402-0070
[email protected]

[phone] 802-863-7313
[fax] 802-863-7577

PM 03 The percentage of EMS agencies in the state/territory that have a MEASURE process
that requires EMS providers to physically demonstrate the correct use of pediatric-specific
equipment
Statement: As written, PM 03 lends itself to wide interpretation by the respondent. In order to
collect meaningful data, it is important to clarify the performance measure and offer wellconsidered guidance to EMS agencies. We find that there are 3 areas needing clarification: type
of equipment, use of standardized courses, and use of the National Registry’s Continued
Competency Program for provider recertification.
Comments:
• We recommend that a list of example pediatric-specific equipment/supplies be
developed and provided to survey respondents to illustrate the type/scope of pediatric
items that may be considered when answering the proposed survey questions.
Equipment/supplies vary based on certification levels, protocols, local and state medical
direction among other factors. A focus on the ABC’s of pediatric EMS is recommended.
Examples of equipment/supplies:
BLS

Oro-and naso-pharyngeal airways
Suction: tips, catheters, bulb suction
BVM, selection mask/bag sizes
Supraglottic airway: size/insertion/confirmation of placement
Weight/length-based tape use
AED
Child safety restraints (safety seats, safety harness, etc.)

ALS

IV/IO insertion
ET tubes: size/insertion/confirmation
Needle decompression
Manual defibrillator, including synchronized cardioversion and transcutaneous
pacing
•

It is important that survey questions include specific reference to Healthcare Provider
CPR, PALS, PEPP, APLS, EPC and NRP. All of these standardized programs require
physical demonstration of certain pediatric-specific skills. They all require a
recertification process every two years. We strongly recommend that use of these
courses be acknowledged and included when responding to PM 03 survey questions.
Additionally, in some areas, local medical directors require specific ‘skills-checkoffs’
annually or bi-annually. We recommend referring to these possible activities as well.

Emergency Medical Services for Children State Partnership Program

New England Region
Region Lead: Stephanie Busch
108 Cherry Street – PO Box 70
Burlington, VT 05402-0070
[email protected]

[phone] 802-863-7313
[fax] 802-863-7577

•

Many states use or are moving to the National Registry of EMT’s Continued Competency
Program for provider recertification. The National Registry specifically requires skillverification by the service training officer or designee. We recommend that the use of
the CCP recertification program for pediatric skills verification be acknowledged and
allowed when responding to survey questions.

•

We are concerned that the current scoring method for the proposed rubric may be
biased against smaller, voluntary EMS agencies. Based on information referenced in the
performance measure about the relative infrequency of pediatric EMS response, we can
assume that many rural/volunteer providers may not see any pediatric patients in a
given year. This removes the service option to respond to the referenced item in the
rubric. If they are presently assessing skill review annually and can also include the 2year reviews that come with the standardized courses previously mentioned, they can
achieve a score of ‘6’ and the state data will reflect that these agencies are indeed
working to maintain pediatric skill levels. We therefore recommend that the rubric goal
of “8” be changed to “6” to prevent bias against the rural/volunteer agencies.

Please consider our concerns, and recommendations for the proposed performance measures
as we work together to improve pediatric emergency care across the nation. Thank you.

Deborah Clapp, BA, EMT-P, I/C
Massachusetts Program Manager

Carolina Roberts-Santana MD, MHA
Rhode Island EMSC Program Manager

Stephanie Busch, NREMT
Vermont EMSC Program Manager

Janet Houston EMT-P Retired
New Hampshire EMSC Program Manager

Marcie Gawel, MSN, MS, BS, CPN, SANE, CPS-T
Connecticut EMSC Program Manager

1/4/2016

JSI/WEI/PFSCM Mail ­ Fwd: FW: Public Comment on OMB No. 0915­0298

 
 

 
 

From: HRSA Paperwork 
Sent: Tuesday, December 29, 2015 12:12 PM
To: Resnick, James (HRSA)
Cc: HRSA Paperwork; Wright­Solomon, Lisa (HRSA)
Subject: FW: Public Comment on OMB No. 0915­0298
 

Another comment
 
From: Claire Lenker [mailto:[email protected]] 
Sent: Tuesday, December 29, 2015 10:46 AM
To: HRSA Paperwork
Cc: Brad Troxler, M.D.
Subject: Public Comment on OMB No. 0915­0298
 
The following are public comments submitted for the above OMB reporting package from the University of
Alabama at Birmingham Pediatric Pulmonary Center. We are an MCHB­funded training project who would be
reporting on the proposed measures.
 
1.       The new reporting package will impose additional reporting burden on MCHB training grantees. No
performance measures are deleted. Existing performance measures are modified, and additional measures are
proposed.
2.       Having training grantees report on measures that involve patient/client information does not align with the
purpose of MCHB funded training grants. Funding is not allocated for patient care/client activities. Funding is
allocated for training activities for graduate students pursuing careers as leaders in MCH, to provide continuing
education, and technical assistance for MCH professionals. Adding a reporting requirement on patient care/client
activities (for example, number of clients referred for insurance coverage as part of Performance Measure LC1;
number of clients assessed/screened for tobacco cessation as part of Performance Measure LC2, etc.) would
require significant time of project faculty to develop a system to track this information.
3.       The proposed Capacity­Building Measure 1 does not seem applicable to training grants.
4.       The proposed Capacity­Building Measure 2 (TA) is duplicative of information collected in the Administrative
Forms. If required of MCHB funded training grants, this would be a nearly 100% duplication of effort. It is unclear
why both would be required.
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5.       The proposed Capacity­Building Measure 5 (scientific publications) and proposed Capacity­Building Measure
6 (products) are duplicative of information collected in Administrative Forms (products and publications). If
required of MCHB funded training grants, this would be a nearly 100% duplication of effort. It is unclear why both
would be required.
6.       The “revised form 6” (abstract), Section V, section 2, is titled “Aims and Key Activities.” Our 2015 FOA
included 4 “aims” to be addressed in the application, however we were also required to write goals and
measurable objectives using SMART format. Clarification on whether this section should be written addressing
the “aims” from the FOA or the goals and objectives as written in our application would be helpful. The
instructions indicate MCHB will pre­populate this information, but uses the terms “aims” and “goals”
interchangeably in the instructions.
7.       The instructions on page 161 for the project abstract do not match the abstract form.
Abstract Form                                                                                                  
Instructions
                                            I.             Project Identifier Information                                                            I.

Project Identifier Information
                                          II.             Budget                                                                                        

                II. Budget
                                        III.             Types of Service Provided                                                   

                III. Types of Services
                                        IV.             Domain Services are Provided to                                                    

(no instructions)                             
                                          V.             Project Description or Experience to Date                                    IV.

Program Description OR Current Status
1.        Problem                                                                                                     
1. Brief Description of project/problem
2.       Aims/Activities                                                                                          2.
Up to 5 “aims” (see above)
3.       HP2010 Objectives                                                                                  3.
HP2020 Objectives (2010 or 2020?)
4.       (there is no #4)                                                                                         4.
Describe programs/activities to reach aims
5.       Coordination                                                                                              5.
Coordination
6.       Evaluation                                                                                                  
6. Evaluation
7.       Quality Improvement Activities                                                        (no
instructions for reporting of QI activities)
                                          V.             (V is repeated) Key Words                                                       

           V. Key Words
                                        VI.             Annotation                                                                                

                 VI. Annotation
 
8.       We have been notified by MCHB that they intent to replace the Continuing Education reporting
administrative form currently in the OMB package with a different form. The new form resembles current
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reporting requirements and would not impose any additional reporting burden.
9.       The proposed administrative form for TA is a significant change from prior reporting requirements.
Having very different reporting forms for CE and TA requires development of a new reporting system for
grantees and imposes additional reporting burden for grantees. Specifically, The “target audience” pick list
for TA (Local, Title V, Within State, Another State, Regional, National, International) does not match the pick
list for CE target audience (Within State, With Another State, , Regional, National, International). It should be
noted that the TA pick list categories are not mutually exclusive. For instance, is TA provided to my state
Title V program counted as “Title V” or “Within State? The topic lists for TA and CE also do not match. The
CE topic lists resemble the current reporting format and impose new additional burden. The proposed TA
topic list A lacks an “other” category, placing al limit on allowing grantees to tell their story. The
proposed TA topic list B is aligned with the National MCHB Block Grant Performance Measures and would
require a new reporting system, an additional burden on grantees, and also lacks and “other” category.
MCHB funded training grants have different goals than Block Grants and may provide TA in different
categories. For example, the primary goal of training grants is to train future leaders. There is no TA topic for
“leadership” and this information would therefore not be captured; there is also no TA topic for systems of
care for CSHCN, another major focus of training grants. In conclusion, alignment of CE and TA reporting
requirements is encouraged to facilitate a single system for grantees; and alignment of CE and TA
reporting with training grantee mission is encouraged.  
 
Thank you for soliciting public comments. We look forward to seeing the final reporting package and working with
our project officer to continue telling the MCHB Training Grant story through our reporting.
 
 
Claire V Lenker, LCSW, CCM
Associate Professor of Pediatrics
Co­Director & Social Work Faculty
Pediatric Pulmonary Center
Division of Pediatric Pulmonary and Sleep Medicine
University of Alabama at Birmingham
Address:
Children’s of Alabama
ACC­620
1600 7th Avenue South
Birmingham, AL 35233
PH: 205­638­5496
FAX: 205­975­5983
Email: [email protected]
Web site: http://www.uab.edu/medicine/peds/ppc
 

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January 5, 2016

HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
Re: EMSC State Partnership performance measures (part of the Maternal and Child Health Bureau
Discretional Grant Information System (DGIS) Information Collection Request); Federal Register/ Vol. 80,
No. 215 / Friday, November 6, 2015
Dear Sir:
In an effort to comply with the new performance measure process, the Rhode Island EMS for Children
Program appreciates the opportunity to comment on the Maternal and Child Health Bureau’s proposed
revision to the EMSC performance measures. The RI EMSC program is as intended dedicated to improving
Emergency Care provided to Children and understands the overall goals promoted by the performance
measures. In that light, we are submitting suggestions detailed below to the MCH Bureau. Our request is
that our suggestions be examined more closely prior to performance measures being finalized. Our
suggestions are made in an effort to alleviate the strong possibility for confusion causing
misinterpretation and collection of inaccurate data.
Thank you for the opportunity to comment on these proposed performance measures. If you have any
questions about our comments, feel free to contact me.
Sincerely,

Carolina Roberts-Santana MD MHA
Carolina Roberts-Santana MD, MHA
RI EMS for Children Program Director
RI Department of Health
Center for EMS
3 Capitol Hill Room 105
Providence, RI 02907

General Comments
The Rhode Island Department of Health Center for EMS functions very differently than many other states
is what I imagine every state will state. However, more than relate to their individualities we thought of
what are our commonalities. If we look at where we are common, we could probably be able to find the
denominator that will help us all create a similar impact in our states. Identifying commonalities, and
using the appropriate tools to measure those commonalities will give a better proof of success. Most
importantly, clarity is essential, so we do not drown in the whys, how’s, what’s, when’s, and where’s, but
are able to focus on a clear common goal which is a positive pediatric outcome throughout the states.
Therefore, the RI EMSC Program urges the Maternal and Child Health Bureau to review all comments
regarding the new EMSC performance measures before final adoption in order to avoid the problems
experienced the first time that EMSC performance measures were developed.
EMSC Proposed Performance Measure 1:
The degree to which EMS agencies submit NEMSIS compliant version 3.x data to the state EMS office for
submission to NEMSIS Technical Assistance Center (TAC).
1. RI EMSC recommends the elimination of this performance measure. NEMSIS compliance is not within
the roles or scope of an EMS for Children Program Manager. According the EMSC National Resource
Center “The primary role of the SP manager is to coordinate and manage all aspects of the EMSC SP
program to ensure that the emergency care needs of children are well integrated throughout the
entire continuum of care, from illness and injury prevention to bystander care, dispatch, prehospital
EMS, definitive hospital care, rehabilitation, and return to community.” The data collection oversight
is limited to helping NEDARC with survey techniques, and help NRC collect pediatric specific data
collection as wells a submitting data to HRSA.
2. In addition, EMS Compass is working on developing overarching EMS performance measures that will
be based on the latest version of the National EMS Information System (NEMSIS) and will allow local
and state EMS systems to use their own data meaningfully.
EMSC Proposed Performance Measure 2:
The percentage of EMS agencies in the state/territory that have a designated individual who coordinates
pediatric emergency care.
1. RI EMSC recommends clarification on “designated individual”.
2. RI EMSC recommends the development of a guide that explains the details of the pediatric
emergency care coordinator that includes: Researched best practices, scope of work, opportunities
for funding, certification requirements and education.
3. In RI we have a large volunteer rural EMS; therefore, we recommend innovative models for achieving
this performance measure.
4. We recommend emphasizing that the follow-up questions to the initial questions are for
informational purposes only because these may change the answer from yes to no based on the
requirement. For example, an EMS provider may answer “yes” to the general question for this
performance measure but decide to change the answer to “no” after reading the exhaustive list of
specific responsibilities.
1
Rhode Island Department of Health – Center for Emergency Medical Services – RI EMS for Children

5. We recommend revising or eliminating the question regarding the development of EMS protocols. In
RI we utilize State protocols and this might either confuse the role into creating their own pediatric
protocol and overriding state mandate or simply changing the yes answer of number one back to no.
6. Add additional, explanatory information to the statement “Oversee pediatric process improvement”
so that the survey respondent understands what this means and how it differs from “Ensure that
fellow providers follow pediatric clinical practice guidelines/protocols”.
EMSC Performance Measure 3:
The percentage of EMS agencies in the state/territory that have a process that requires EMS providers to
physically demonstrate the correct use of pediatric specific equipment.
This performance measure is perhaps the most concerning for RI EMSC. Therefore we strongly
recommend that this performance measure be reassessed and significant revisions made in an effort to
prevent general confusion and widely variable interpretation, especially the survey. Regardless of
definitions, surveys are tests, and no one wants to fail the test. Therefore, as the performance measure is
currently written, results will be inaccurate and/or meaningless.
1. We recommend developing a clear definition of the word “process”.
2. Recommend changing the numerator to read: “The number of licensed EMS agencies in the
state/territory that score a 6 or more on a 0-12 scale”.
We concur with other New England states in that while this PM is in line with the national trend towards
clinical competence within regards to continued education of EMS providers, the scoring method with the
proposed rubric is biased against rural states with numerous EMS agencies with very small call volumes.
The evaluative rubric assumes an agency will provide 3 methods of pediatric training and that 90% of
these agencies will have a “process” for it? Adjusting the numerator to a score of ‘6’ or more on a 0-12
would allow the small services to be included in a realistic goal of strengthening the health workforce.
3. Recommend developing a list of pediatric equipment to illustrate the type and scope of pediatric
equipment that may be considered when answering the proposed survey questions. The creation of this
list will assist in defining the “process”.
4. Recommend clarifying and justifying the limitation of the use of standardized courses (PEPP, PALS,
APLS, and ENPC) and the use of the National Registry of EMT’s Continued Competency Program (CCP) in
the services “process”.

2
Rhode Island Department of Health – Center for Emergency Medical Services – RI EMS for Children







1

Capacity-Building Measures





Page 2 of 3

Page 3 of 3

Tennessee EMSC’s response to EMSC State Partnership Performance Measures
January 5, 2016
HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
Re: EMSC State Partnership performance measures (part of the Maternal and Child Health Bureau
Discretional Grant Information System (DGIS) Information Collection Request); Federal Register/ Vol.
80, No. 215 / Friday, November 6, 2015
Dear HRSA:
The Tennessee Emergency Medical Services for Children Program appreciates the opportunity to
comment on the Maternal and Child Health Bureau’s proposed revision to the EMSC performance
measures.
The mission of the HRSA EMS for Children program is to reduce child and youth mortality and
morbidity caused by severe illness or trauma. EMS for Children aims to ensure that


state of the art emergency medical care is available for the ill and injured child or adolescent;



pediatric service is well integrated into an emergency medical service system backed by optimal
resources; and



the entire spectrum of emergency services, including primary prevention of illness and injury,
acute care, and rehabilitation, is provided to children and adolescents as well as adults, no matter
where they live, attend school or travel.

TN EMSC is dedicated to the above mission and supports the overarching goals of performance
measures. In that light, it is my intent to utilize the above mission statement that is posted on HRSA’s
website http://mchb.hrsa.gov/programs/emergencymedical/ as the framework for my comments. Our
comments are made in an effort to achieve better outcomes for children through the efforts of the EMSC
program.
Thank you for the opportunity to comment on these proposed performance measures. If you have any
questions about our comments, feel free to contact me.

Sincerely,
Rhonda Phillippi (electronically signed)
Rhonda G. Phillippi, RN, BA
Executive Director

Tennessee EMSC’s response to EMSC State Partnership Performance Measures
Overview:
There are two overarching premises regarding performance measures: 1) the ultimate purpose is
to improve the acute care of children and 2) the expectations of the performance measure must
be clearly defined otherwise the confusion leads to various interpretations and data that doesn’t
demonstrate a difference in the care of children.
As a longstanding EMSC program manager and PI, I would like to provide some historical
context. The first iteration of the EMSC performance measures also was not well defined and it
resulted in much misunderstanding of expectations and the baseline data was not very useful. It
is my hope that this comment period will encourage HRSA to take a pause and ensure the
measures are both flexible and clearly defined. It is also important that the measure is not a
simple measurement so that every state can check off the box but that the measures ultimately
improve the care of children.
EMSC Proposed Performance Measure 01
EMSC Performance Measure 1 (new):
The degree to which EMS agencies submit NEMSIS compliant version 3.x data to the state EMS
office for submission to NEMSIS Technical Assistance Center (TAC).



TN EMSC applauds the proposed performance measure related to NEMSIS and believes
it will improve the overall care of all the citizens in our country but is not a pediatric
specific performance measure.
As future performance measures are developed, please take into consideration the need to
ensure clear applicability to pediatric specific efforts.

EMSC Performance Measure 02:
The percentage of EMS agencies in the state/territory that have a designated individual who
coordinates pediatric emergency care.







Recommend clarifying the definition of a “designated individual.” In Tennessee, many of
the responsibilities lie within the Training Officer Role at each EMS agency.
Recommend in the survey that the follow up questions regarding the coordination of
pediatric emergency care wording be changed to “for informational purposes” only.
It is important to place more emphasis within the sentence on the fact that this list is
simply a list of potential roles and responsibilities and they are not required. This
clarification will result in more accurate data and less confusion.
Add the word “protocols” so that the activity reads: “Ensure that fellow providers follow
pediatric clinical practice guidelines/protocols”.
Add the “the adoption of family centered care policies”
Add “injury” before prevention programs

Tennessee EMSC’s response to EMSC State Partnership Performance Measures




Add additional, explanatory information to the statement “Oversee pediatric process
improvement” so that the survey respondent understands what this means and how it
differs from “Ensure that fellow providers follow pediatric clinical practice
guidelines/protocols”.
The proposed survey includes a question regarding the development of EMS protocols. In
Tennessee, this role is done by the EMS medical director and not the providers. Most TN
EMS agencies adopt the state EMS Medical Directors protocols but the individual
medical director can adopt the state’s, modify them or create their own.

EMSC Performance Measure 03
Tennessee applauds the performance measures towards looking at clinical competencies
however; it is strongly recommended that this performance measure be reassessed and significant
revisions made in an effort to create better clarity.




An EMS agency could meet this measure by simply having a skill station to demonstrate
a bulb syringe and simply oral suction. As the performance measure is currently written,
results will be inaccurate and/or meaningless.
How would an all EMS providers at a service that answers calls in small communities
meet this matrix when it is most likely statistically impossible to every provider to have a
pediatric encounter in the timeframe outlined?
An additional concern from Tennessee’s perspective is the competency or credentialing
of the person evaluating the EMS providers. As this performance measure is written it
would allow a non-certified “instructor” to make competency judgements.

EMSC Performance Measure 04 and 05 (Previously 74 and 75):
The percent of hospitals with an Emergency Department (ED) recognized through a statewide,
territorial, or regional standardized system that are able to stabilize and/or manage pediatric
medical emergency and trauma emergencies.


Tennessee applauds HRSA for inclusion of the pediatric patient with a medical or trauma
emergency presenting to a hospital facility as a performance measure.



The important word in this performance measure is system
o The goal for this Performance Measure should be whether or not the state has
implemented a system (yes or no). It should include a ‘scale’ to determine where
states are in the process of developing their system. By Webster’s definition, a
system is “a group of devices or artificial objects or an organization forming a
network especially for distributing something or serving a common purpose    
To: HRSA Paperwork 
Cc: 
Date: Mon, 4 Jan 2016 18:11:23 +0000
Subject: Information Collection Request Title: Maternal and Child Health Bureau Performance Measures for
Discretionary Grants
Thank you for this opportunity for public comment on the proposed Maternal and Child Health Bureau
Performance Measures for Discretionary Grants (OMB No. 09+0298). My comments, shared by Carolyn
Johnson, PhD, are as follows:
 
Training 6
         Current phrasing in the data collection forms A and B is still a bit confusing, as numerator suggests
current/cross­sectional, while the four domains suggest current or past.
         Suggest inserting phrase “Since completing training program,” if that captures intent of measure (or “in
past 3 years,” if that is intent of Form B).
 
Training 7
         Based on the ultimate intent behind this measure, it may be useful to also capture if a person has
immigrated from another country (and is now a citizen or permanent resident), or is the child of immigrants.
There are a number of trainees who fall into the racial category of “white,” but have a first­hand
understanding of and contribution to cultural and linguistic diversity because of their recent immigration
background.
 
Training 9
         Suggest removing part C, as this is the only measure that requires a 10 year follow­up.
         Again, suggest using phrase “since completing training program,” (consistent with Training 6) as that is
understood intent of measure (rather than cross­sectional).
 
 
 
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Thank you,
Shokufeh
 
­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­
Shokufeh M. Ramirez, MPH
Program Manager, Tulane Center of Excellence in Maternal and Child Health
Tulane University School of Public Health and Tropical Medicine
504.988.3539 (phone)
504.988.3540 (fax)
[email protected]
@TulaneMCH

 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "Peplinski, Kyle (HRSA)" 
To: "Wright­Solomon, Lisa (HRSA)" , HRSA Paperwork 
Cc: 
Date: Mon, 4 Jan 2016 17:44:09 +0000
Subject: RE: COMMENTS Centers of Excellence performance measures
Lisa,
 
There are not for MIECHV.  I think they may be for MCH Workforce development program?
 
Kyle
 

From: Wright­Solomon, Lisa (HRSA) 
Sent: Monday, January 04, 2016 11:39 AM
To: HRSA Paperwork; Peplinski, Kyle (HRSA)
Subject: RE: COMMENTS Centers of Excellence performance measures
 

I’m thinking that these comments are in response to the 30­day FRN.  Correct?  If so, I will
forward them to OMB.
 
Happy new year. . .
 
From: HRSA Paperwork 
Sent: Monday, December 28, 2015 11:57 AM
To: Peplinski, Kyle (HRSA)
https://mail.google.com/mail/u/0/?ui=2&ik=bd0a5c2415&view=pt&search=inbox&msg=1521864da2ee8874&siml=1521864da2ee8874

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JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Nora Wells 
To: HRSA Paperwork 
Cc: 
Date: Wed, 6 Jan 2016 05:04:22 +0000
Subject: Comments on FR DOC#2015­28264
 

Attached please find comments from Family Voices.  
 
 
Nora Wells | Executive Director | Family Voices | 781­879­6209 | [email protected] | www.fv­ncfpp.org |
www.familyvoices.org | www.fv­impact.org | www.fvkasa.org

 
Did you know that ONE in FIVE families has at least one child with special health care
needs?
 
Join the Family Voices One­in­Five Awareness Campaign.

  

  

  

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Julie McDougal 
To: HRSA Paperwork 
Cc: 
Date: Wed, 6 Jan 2016 04:37:15 +0000
Subject: DGIS proposed performance measures feedback

 I’ve completed listening to the archived webinar and reviewing the proposed performance measures. Here
are the questions that I would ask or feedback I would provide:
1.       Core 2 PM – Goal 2: Quality Improvement ‐ Because some projects are primarily academic institutions,
their QI initiatives might have a student or academic foci. I suggest changing the wording of “Improve client
satisfaction” to “Improve client satisfaction/outcomes” as, in some cases, their “clients” are often their
students and those projects might be focusing on something besides satisfaction (like graduation rates,
MCH competency knowledge/skills, etc.)
2.       “Table 1: Activity Data Collection Form for Selected Measures (PROPOSED)” (Attachment B: Detail
Sheets|51) will be VERY DIFFICULT to report, primarily because it is difficult to know what the difference is
between “Providers/Professionals” and “Community Partners”, for instance. Frequently, the “Consumers”
of our TA efforts are both Providers/Professionals AND Community Partners, which would make them
eligible for all 3 categories. In addition, for academic programs that provide TA to many groups through
individual faculty, collecting this information will be cumbersome. 
https://mail.google.com/mail/u/0/?ui=2&ik=bd0a5c2415&view=pt&search=inbox&msg=15218640d04cee59&siml=15218640d04cee59

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JSI/WEI/PFSCM Mail ­ Re: FW: 17 of 34 comments on DGIS ­ email 1 of 2

3.       On the detail sheet for “Family/Youth/Community Engagement in MCH Training Programs”, the word
“community members” needs to be made plural in boxes 1, 3, and 4 so that those boxes are consistent
with boxes 2 and 5. To clarify, in box 2, “population served”, in some cases, often means “students”. Also, I
suggest adding “students/trainees” to the end of box 5 and expanding the word “staff” to “faculty/staff”.
As it’s currently written, it’s very service organization oriented. Since the primary focus of many projects is
as academic graduate training programs, I would think HRSA would want to know if they've got family
members/youth/community members working with their training programs to provide training to their
faculty/staff and students/trainees.
4.       On the detail sheets for “Cultural Competence in MCH Training Programs”, I LOVE that boxes 4 and 5
have been expanded to “staff/faculty”, not just “faculty”.
5.       On the data collection forms for “Field Leadership”, both 2 and 5 years after training completion,
different language for D. and E. (I. and J.) is used. For D. and I., the term “demonstrating field leadership” is
used and, for E. and J., the term “demonstrating MCH leadership” is used. This is confusing! These data
collection forms are for the “Field Leadership” goal, so it seems that both should use consistent language
(“demonstrating field leadership”).
6.       On the data collection form for “Interdisciplinary Practice”, this is the language used: “The number of
long‐term trainees who WORK…”. However, on the data collection form for “Field Leadership”, this is the
language used: “Number of trainees that HAVE PARTICIPATED…”. The language used for Interdisciplinary
Practice needs to be changed to “The number of long‐term trainees who HAVE WORKED…” for
consistency’s sake. Also, the language for “Field Leadership” can be translated “Have you done this?”, but
the language for “Interdisciplinary Practice” is translated “Are you doing this right now?” If the language
remains unchanged, the data collected for Interdisciplinary Practice will not represent what HRSA wants to
know. On a separate note, if we’re contacting former trainees 10 years after training completion, it’s just
not that big of a deal to ascertain their field leadership along with their interdisciplinary practice. Why
wouldn’t we collect both at 10 years rather than only collecting interdisciplinary practice at 10
years? Additionally, the required information for interdisciplinary practice is vague. We can glean this
information from our graduates, but a clearer explanation  for these data points might be helpful in asking
the questions. 
7.       On the sheet for “Category #2: Participation in Policy Change and Translation of Research into Policy”,
the wording of the “If yes…” statement in boxes 5 and 6 needs to be made consistent with box 4. Both
need to be changed to “If yes, indicate the policy arenas to which they have contributed”. Left alone, they
are confusing and grammatically incorrect.
Thank you for the opportunity to provide feedback to the proposed Performance Measures!

Julie McDougal
UAB School of Public Health
­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "Lyons, Evelyn M." 
To: HRSA Paperwork 
Cc: 
https://mail.google.com/mail/u/0/?ui=2&ik=bd0a5c2415&view=pt&search=inbox&msg=15218640d04cee59&siml=15218640d04cee59

7/19

Virginia Comments (EMSC Performance Measure Detail Sheet)

December 31, 2015

Comments were only provided if changes were recommended)

Virginia Comments to EMSC Performance Measure Detail Sheet published in the
Federal Register, Vol. 80, No. 215, Friday, November 6, 2015.
------------------------------------------EMSC 02: The percentage of EMS agencies in the state that have a designated individual who
coordinates pediatric emergency care.
Goal: By 2026, 90% of EMS agencies in the state have a designated individual who
coordinates pediatric emergency care.
Virginia Comments:
In Virginia, “coordination of care” at the EMS agency level is held closely by the
Operational Medical Directors (OMD) for the agency, on whom the responsibility of field
care is borne by extension with the OMD’s license to practice medicine. We would
respectfully suggest a more suitable role for an EMS provider to accomplish the intent of
EMSC Performance Measure 02 would be as a Pediatric “Advocate” for the EMS
agency, with some focused but minimal changes in the wording of suggested
responsibilities.
75% of Virginia’s EMS agencies are staffed with volunteers, and to many, pushing for
this “coordinator of pediatric care” this would be seen as requiring an additional
unfunded role; one which many do NOT have an existing member suitably trained,
compensated, or even available to undertake. The description of the role of the
“coordinator” uses words like “ensure” and “oversee” which will not be acceptable to the
agencies whom we are nurturing relationships in order to achieve these performance
measures. We would be coming off as being in an “ivory academic tower”, especially to
our smaller numerous rural providers and we cannot realistically mandate in regulation
that these agencies name someone to assume this role with the current wording. They
would immediately enlist legislators to come to their assistance to block us, even if their
medical directors did not. Please consider replacing “coordinator” with “advocate”.
-----------------------------EMSC 03: The percentage of EMS agencies in the state that have a process that requires EMS
providers to physically demonstrate the correct use of pediatric-specific equipment.
Goal: By 2026: 90% of EMS agencies will have a process that requires EMS providers to
physically demonstrate the correct use of pediatric-specific equipment which is equal to
a score of ‘8’ or more on a 0-12 scale.
Virginia Comments:
The scoring method is not realistic for small EMS agencies who see very few pediatric
patients, and who do not have the luxury of field training officers or supervisors
Page 1 of 3

Virginia Comments (EMSC Performance Measure Detail Sheet)

December 31, 2015

monitoring their care. They need a definable process by which they can demonstrate
specific skills on specific equipment to someone who can mentor them if their technique
is not what it should be; simple and patient-centered, and not dependent upon records of
past calls, etc.
------------------------------EMSC 04: The percent of hospitals with an Emergency Department recognized through a
statewide or regional standardized system that are able to stabilize and/or manage pediatric
medical emergencies.
Goal: By 2017, 25% of hospitals are recognized as part of a statewide or regional
standardized system that are able to stabilize and/or manage pediatric medical
emergencies.
Virginia’s Comments:
Virginia does not have a problem with the goal or the performance measure, but would
prefer that “statewide or regional standardized system that are able to stabilize and/or
manage pediatric medical emergencies” be better defined.
Is compliance with the minimum standards set forth by the AAENA/ACEP consensus
document (most current version) by emergency departments considered to meet that
definition, or is it more appropriate to construct a multi-level
recognition/categorization/designation system?
---------------------------------EMSC 05: The percent of hospitals with an ED recognized through a statewide or regional
standardized system that are able to stabilize and/or manage pediatric traumatic emergencies.
Goal: By 2017, 50% of hospitals are recognized as part of a statewide or regional
standardized system that recognizes hospitals that are able to stabilize and/or manage
pediatric trauma.
Virginia’s Comments:
The problem here seems to be in not defining “statewide or regional standardized
system that recognizes hospitals that are able to stabilize and/or manage pediatric
trauma”, which makes the current wording and the target percentage appear arbitrary
and excessive. We also wonder how the 50% figure was chosen and/or validated, as
we would argue that some states with robust trauma systems that do address pediatrics
would not be able to meet this 50% metric.
Advocating for “regionalization” of care, then requiring that half of hospitals achieve
“recognition” of specialized pediatric trauma capabilities seems to be sending a mixed
message. Virginia does not want 50% of hospitals to be designated as trauma
centers—it would make no sense. In order to be licensed now under Virginia code,
Page 2 of 3

Virginia Comments (EMSC Performance Measure Detail Sheet)

December 31, 2015

every hospital must agree to honor statewide trauma triage guidelines that have been
developed through the Trauma System Oversight & Management Committee and
approved by the Board of Health (which now contain specific pediatric components), and
the hospital must transfer or redirect patients meeting those criteria to a designated
trauma center. So, the hospitals DO participate in such a system as the performance
measure implies—they are just not formally designated or recognized like the
designated trauma centers (other than by licensure). Unfortunately, we would never be
able to achieve the 50% goal stipulation with the way Performance Measure EMSC 05 is
currently worded.
--------------------------------

Page 3 of 3

State of Vermont
Department of Health
Office of Public Health Preparedness
Emergency Medical Services & Injury Prevention
108 Cherry Street – PO Box 70
Burlington, VT 05402-0070
http://www.vermontems.org

Agency of Human Services
802-863-7313
[fax]
802-863-7577
[toll free] 800-244-0911
[email] [email protected]
[phone]

January 5, 2016
HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
Re: EMSC State Partnership performance measures (part of the Maternal and Child Health
Bureau Discretional Grant Information System (DGIS) Information Collection Request);
Federal Register/ Vol. 80, No. 215 / Friday, November 6, 2015
To Whom It May Concern:
The Vermont EMS for Children Program appreciates the opportunity to comment on the
Maternal and Child Health Bureau’s proposed revision to the EMSC performance measures.
Our suggestions are made in effort to ensure the performance measures will have the
ability to make tangible improvement in our important mission of improving pediatric
emergency care. We encourage the MCH Bureau to review our suggestions detailed below
and examine more closely these details as performance measures are finalized.
Thank you for the opportunity to comment on these proposed performance measures. If
you have any questions about our comments, feel free to contact me.

Sincerely,

Stephanie Busch, NREMT
Vermont Emergency Medical Services for Children Program
Division of Emergency Preparedness, Response, and Injury Prevention
Vermont Department of Health
108 Cherry Street, Suite 201, Burlington, VT 05401

1|Page

General Comments
Each EMS system varies greatly from region to region, and state to state due to a number of
factors. All states and territories can meet and achieve a positive pediatric patient outcome
but they may not all do so by the same method. Performance measures need to be flexible
in order for the program goals to be achievable. Ignoring the diversity of EMS agencies and
EMS systems when developing the EMSC performance measures, will inhibit the success of
the program.

EMSC Proposed Performance Measure 01
The degree to which EMS agencies submit NEMSIS compliant version 3.x data to the state
EMS office for submission to NEMSIS Technical Assistance Center (TAC).
Statement:
The proposed performance measure related to NEMSIS is not a pediatric specific
performance measure. EMS data is essential in understanding trends/opportunities for
improvement in the prehospital setting; however addressing statewide EMS data systems
is the responsibility of the State EMS offices. As future performance measures are
developed, please take into consideration the need to ensure clear applicability to pediatric
specific efforts.

EMSC Proposed Performance Measure 02
The percentage of EMS agencies in the state/territory that have a designated individual
who coordinates pediatric emergency care.
Recommendations:
1. Recommend clarifying the definition of a “designated individual” and allow
innovative ideas for achieving this performance measure. Large EMS services may
have the ability to designate a single individual to coordinate pediatric emergency
care. Rural areas of the country with very small EMS services already have adopted
innovative models that utilize regional pediatric emergency care coordinators.
Innovative models and flexibility are needed for achieving this performance
measure.
2. Recommend emphasizing that the follow-up questions to the initial questions are
for informational purposes only and that the list is simply a list of potential roles
and responsibilities for the designated individual. The follow-up questions ask
about the specific roles of the coordinator, this will result in less confusion of the
role, and allow EMS agencies to develop the role to meet the need. In Vermont, we
are fortunate to have statewide protocols/ guidelines; individual services have little
say in the development of new protocols.
3. Recommendations for the list of potential roles and activities:
Add to the list2|Page

“Promote the adoption of family centered care policies.” This was in the original IOM
suggestions for the activities.
Add the word “injury” so that the activity reads “Promote agency participation in
pediatric injury prevention programs.”
Add the word “protocols” so that the activity reads: “Ensure that fellow providers follow
pediatric clinical practice guidelines/protocols”. Many states have protocols therefore
adding the word will preclude confusion and ensure more accurate data.
Add additional information to the statement “Oversee pediatric process improvement”
so that the survey respondent understands what this entails and how it differs from
“Ensure that fellow providers follow pediatric clinical practice guidelines/protocols”.
EMSC Proposed Performance Measure 03
The percentage of EMS agencies in the state/territory that have a process that requires
EMS providers to physically demonstrate the correct use of pediatric specific equipment.
It is strongly recommended that this performance measures be reassessed and significant
revisions made in effort to prevent biased against smaller, rural EMS agencies. It is
recommended to develop a clear defining the “process” related to this performance
measure.
1. Recommend changing the numerator to read: “The number of licensed EMS agencies
in the state/territory that score a 6 or more on a 0-12 scale” to allow the small
volunteer and, first responder communities to be included in a realistic goal of
strengthening the health workforce.
Many states have a large portion of first response/ non-transporting services within
their EMS system. A voluntary EMS provider, for a small volume agency, may not see a
pediatric patient within a year (or two or three) therefore requiring EMS providers to
demonstrate skills via a field encounter is not realistic or achievable.

2. Equipment List Recommendation: It is important to clarify the performance
measure and provide well-considered guidance to the services. Three areas needing
clarification are type of equipment, use of standardize courses in the services
“process” and use of the National Registry of EMT’s Continued Competency Program
(CCP) in the services “process”.
It is suggested that a list of example pediatric-specific equipment be developed and
provided to the survey respondents to illustrate the type and scope of pediatric
equipment that may be considered when answering the proposed survey
questions. With the wide variety of protocols, and skills among EMS in the nation, the
equipment competency should have a strong focus on the ABC’s of EMS! The
3|Page

following list is an example of pediatric specific equipment that might be used in an
EMS agencies competency testing.
Examples/Suggested list includes:
BLS:
1. Oro- and Nasopharyngeal airways
2. Suctioning - tips and catheters and bulb suction
3. BVM- selection mask and bag sizes
4. Supraglottic airway - selection of size, insertion technique, and confirmation of
placement
5. AED
6. Child safety restraints (safety seats and other kinds of child specific restraints)
7. IV and IO Insertion
8. Weight/ Length-based Tape use
ALS:
9. ET tubes - selection of size, insertion technique, and confirmation of
10. Manual Defibrillator and synchronized cardioversion
3. It is strongly recommended that the use of CCP recertification program to verify
pediatric specific equipment skills be acknowledged and allowed when answering
the survey questions for PM 3.
Since many services include standardized classes/courses in their “process” to ensure
that providers physically demonstrate the correct use of pediatric-specific equipment, it
is important that the survey include information regarding PALS, PEEP, APLS, ENPC,
and NRP. All these courses require physical demonstration of some pediatric specific
equipment skills. It is strongly recommended that use of these courses be
acknowledged and allowed when answering the survey questions for PM 3.

4|Page

1/7/2016

JSI/WEI/PFSCM Mail ­ Fwd: FW: 2nd group of 17 emails of 34 total, email 2 of 2

Nichole
 
Nichole Goble
Program Administrator, The National Alliance to Advance Adolescent Health
1615 M Street NW, Suite 290
Washington, DC 20036
202­223­1500
www.gottransition.org
www.thenationalalliance.org

 
 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: Anne Bradford Harris 
To: HRSA Paperwork 
Cc: 
Date: Tue, 5 Jan 2016 03:59:54 +0000
Subject: comments on proposed DGIS measures for MCH Training Programs
Hello ­ I would like to submit some comments regarding the proposed new and
revised DGIS Performance Measures (PM) related to TRAINING programs funded by
the Maternal and Child Health Bureau.
For the most part, the new and revised PM appear to be relevant and meaningful.
 However I do have some questions about the following which appear either
confusing or not relevant as described:
Training 09 ­ Interdisciplinary Practice
While the aggregate data on per cent of long­term trainees that work in an
interdisciplinary manner would be relevant based on responses for the listed
activities, I'm not sure why the individual % for each item is helpful.
Training 13 ­ Policy Development
Under Category #1 Training, Elements 1­3 ­ is this referring to participants in
the LONG­TERM training program?  Please specify whether the intended measurement
is for long­term trainees, both activities and the % of trainees with increased
policy knowledge and skills.
Technical Assistance and Collaboration Form (and also Continuing Education)
While the new way of choosing/categorizing the activities could be helpful in
reducing reporting burden, the topics listed in List B do not include many
relevant issues for which the LEND programs provide technical assistance and
continuing education.  Missing from list B are topics related to
neurodevelopmental disabilities such as autism and other developmental
disabilities; children with special health care needs; developmental screening;
early childhood growth, development and education; and life course issues.  This
list seems to narrow. If other topics can not be added, please add an "other"
category/option.
Also, I'm not sure why Title V is added as a separate primary target audience
for technical assistance ­ this appears redundant with listing Title V as the
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1/7/2016

JSI/WEI/PFSCM Mail ­ Fwd: FW: 2nd group of 17 emails of 34 total, email 2 of 2

recipient of TA/Collaborator, and would be very confusing to complete data entry.
Thank you for the opportunity to comment.
Anne B Harris, PhD, MPH, RD
WI LEND Director
Assoc Clinical Professor, Pediatrics
Waisman Center, UCEDD
University of Wisconsin, Madison
1500 Highland Ave, Room S101C
Madison, WI 53705
(608) 263­5796
www.waisman.wisc.edu
­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "Caffrey, Sean" 
To: HRSA Paperwork 
Cc: "Morrison­Quinata, Theresa (HRSA)" , "Adelgais, Kathleen"
, Grace Sandeno 
Date: Tue, 5 Jan 2016 01:21:58 +0000
Subject: EMS for Children Performance Measure Comment
Greetings HRSA Team,
Please see the attached comment from the Colorado EMS for Children Program regarding performance measure
EMSC 03. Overall we encourage a more broad based approach to this measure which we believe is currently not
well defined too narrowly constructed. We appreciate your consideration and would be pleased to answer any
additional questions you may have. 

­­­­­­­­­­ Forwarded message ­­­­­­­­­­
From: "House, Joe [BEMS]" 
To: HRSA Paperwork 
Cc: 
Date: Mon, 4 Jan 2016 21:51:45 +0000
Subject: Maternal and Child Health Bureau Performance Measures for Discretionary Grants
The attached file relates the comments from the Kansas Board of Emergency Medical Services upon the Notice
of Information Collection Request published in the November 6, 2015 Federal Register.  Thank you for your
review of these comments and consideration. Please let me know if you require any further explanation.
We strive to assist in solutions, so if the need arises for assistance in the future development of performance
measures for EMS related grant offerings, we would be interested in participating.  Joe
 

Joseph House, Paramedic
Executive Director
Kansas Board of EMS
900 SW Jackson; Suite 1031
Topeka, KS  66612­1228
Phone: (785) 296­7296
Fax: (785) 296­6212
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9/26

New Hampshire

EMS for Children Project
Geisel School of Medicine at Dartmouth
Dept. of Community & Family Medicine
One Medical Center Drive
Lebanon, NH 03756
Office: (603) 653-8352
Facsimile: (603) 653-8354

January 5, 2016
HRSA Information Collection Clearance Officer
Room 10-29, Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
Re: EMSC State Partnership performance measures (part of the Maternal and Child
Health Bureau Discretional Grant Information System (DGIS) Information Collection
Request); Federal Register/ Vol. 80, No. 215 / Friday, November 6, 2015

Dear Sir:
The New Hampshire EMS for Children Program appreciates the opportunity to comment
on the Maternal and Child Health Bureau’s proposed revision to the EMSC performance
measures. The NH EMSC program is dedicated to improving emergency care provided to
children and supports the overall goals promoted by the performance measures. In that
light, we encourage the MCH Bureau to review our suggestions detailed below and
examine more closely these details as performance measures are finalized. Our
suggestions are made in an effort to alleviate the strong possibility for confusion causing
misinterpretation and collection of inaccurate data.
Thank you for the opportunity to comment on these proposed performance measures. If
you have any questions about our comments, feel free to contact me.
Sincerely,

Janet Houston, MHA
NH EMS for Children Program
Geisel School of Medicine at Dartmouth
One Medical Center Drive
Lebanon, NH 03756

NH EMSC PM Recommendations

January 5, 2016

General Comments
EMS services and systems vary from state to state and region to region. All states and
territories can meet and achieve a positive pediatric patient outcome but they may not all
do so using the same method. Measuring performance measures needs to be flexible
enough to take into account that multiple methods are valid in achieving the same goal.
Ignoring this diversity when developing performance measures creates an environment
that won’t allow the measure to succeed. At the same time the background information and
expectations of each performance measure must be clearly defined and understood by all.
Ambiguity leads to multiple interpretations and therefore will lead to data that are
misleading and not comparable.
With the first version of EMSC performance measures, they were developed without the
full understanding of the underpinnings mentioned above. This resulted in many problems
and misunderstandings and baseline data that were not consistent across the states and
territories. There were 3 years of frustration and many revisions to the “EMSC
Performance Measures: Implementation Manual for State Partnership Grantees” before
the measures were made both flexible and clearly defined.
The NH EMSC Program urges the Maternal and Child Health Bureau to review all
comments regarding the new EMSC performance measures before final adoption in order
to avoid the problems experienced the first time that EMSC performance measures were
developed.

EMSC Proposed Performance Measure 1:
The degree to which EMS agencies submit NEMSIS compliant version 3.x data to the
state EMS office for submission to NEMSIS Technical Assistance Center (TAC).

1. Recommend that this performance measure be eliminated. The proposed performance
measure is not a pediatric specific performance measure and is being address by other
groups. EMS Compass is working on developing overarching EMS performance
measures that will be based on the latest version of the National EMS Information
System (NEMSIS) and will allow local and state EMS systems to use their own data
meaningfully.

EMSC Proposed Performance Measure 2:
The percentage of EMS agencies in the state/territory that have a designated individual
who coordinates pediatric emergency care.

1. Recommend clarifying the definition of a “designated individual” and allow innovative
ideas for achieving this performance measure. Large EMS services may have the ability
to designate a single individual to coordinate pediatric emergency care. This is similar to
NH EMSC PM Recommendations

January 5, 2016

the model IOM recommendation that an individual in a hospital emergency department
should be designated. However, EMS services are not mobile replicas of emergency
departments and it is important to take this reality into account. Rural areas of the country
with very small EMS services already have adopted innovative models that utilize regional
pediatric emergency care coordinators. Innovative models are needed for achieving this
performance measure.

2. Recommend emphasizing that the follow-up questions to the initial questions are for
informational purposes only. The follow-up questions ask about the specific roles of the
coordinator. The only indication that the list or roles is not a requirement (in part or in total),
for an affirmative answer to the first question, is the use of the single word “could”. This is
a very subtle way of indicating that the list is not a requirement and may be easily
overlooked by the provider completing the survey. As a result, an EMS provider may
answer “yes” to the general question for this performance measure but decide to change
the answer to “no” after reading the exhaustive list of specific responsibilities. It is
important to place more emphasis within the sentence on the fact that this list is simply a
list of potential roles and responsibilities and they are not required. This clarification will
result in less confusion and better, more accurate data.

3. Specific suggestions for the list of potential roles and activities:
Add - “Promote the adoption of family centered care policies.” This was in the original
IOM suggestions for the activities.
Add the word “injury” so that the activity reads “Promote agency participation in pediatric
injury prevention programs.”
Add the word “protocols” so that the activity reads: “Ensure that fellow providers follow
pediatric clinical practice guidelines/protocols”. Many states have protocols therefore
adding the word will preclude confusion and ensure more accurate data.
The proposed survey includes a question regarding the development of EMS protocols. In
many states, this is role is not available to providers as mandated protocols are developed
at a state or regional level. Suggest that a third response option should be provided to
reflect this situation as a way to minimize confusion and gain better, more accurate data.
Add additional, explanatory information to the statement “Oversee pediatric process
improvement” so that the survey respondent understands what this means and how it
differs from “Ensure that fellow providers follow pediatric clinical practice
guidelines/protocols”.

NH EMSC PM Recommendations

January 5, 2016

EMSC Performance Measure 3:
The percentage of EMS agencies in the state/territory that have a process that requires
EMS providers to physically demonstrate the correct use of pediatric specific equipment.
It is strongly recommended that this performance measure be reassessed and significant
revisions made in an effort to prevent general confusion and widely variable interpretation.
Surveys that cause confusion are generally not completed or submitted, as responsible
people do not want to provide inaccurate information. If the EMSC program coordinator
does not know how to interpret the question, how can we expect the busy EMS provider to
interpret it? As the performance measure is currently written, results will be inaccurate
and/or meaningless.
1. Recommend developing a clear definition of the word “process”.
Below is a list of a few of the likely questions that will be voiced:
• Must the process include all pediatric equipment? If yes, what equipment would
that include? What exceptions would have to be made for local scope of practice?
• If the EMS unit has a “process” to demonstrate the use of a pediatric length-based
tape twice a year, but no other pediatric equipment is included in the “process”,
would the EMS unit be able to claim a “process for pediatric-specific equipment”
resulting in a score of 4 according to the rubric?
• If each provider is required to demonstrate (via a skill station) the use of a pediatric
oral airway once a year and the use of a pediatric IO once a year, does that result in
a score of 4 according to the rubric?
• If providers are required to complete a PALS course every other year and required
to demonstrate pediatric skills via a skill station during the opposite year, does this
constitute a “process” and result in a score of 2 according to the rubric?
• Can maintenance of pediatric CPR certification count as part of the “process”?
• If an EMS provider uses pediatric equipment in the field and the emergency
department staff find no fault in its application, why do we need someone on our
service ride along to verify pediatric skills? The ED physicians and nurses are more
skilled and knowledgeable about pediatric care than our training officer or chief. We
see children very infrequently.
• My providers are participating in the National Registry of EMT’s Continued
Competency Program for recertification and it includes pediatric equipment skills.
Can this be considered part of our “process”?
2. Recommend changing the numerator to read: “The number of licensed EMS agencies in
the state/territory that score a 6 or more on a 0-12 scale”.
While this PM is in line with the national trend towards clinical competence within regards
to continued education of EMS providers, the scoring method with the proposed rubric is
biased against rural states with numerous EMS agencies with very small call volumes. The
evaluative rubric assumes a provider will demonstrate pediatric skills using 3 methods (skill
station, case scenario and field encounter). The fact is that an EMS provider for a small
volume agency may never see a pediatric patient within a year (or two or three) therefore
use of field encounters is not realistic or achievable. The Lamer paper states that a

NH EMSC PM Recommendations

January 5, 2016

paramedic treats a teen on average once every 625 days, a child every 958 days, and an
infant every 1087 days. Using this cited reference, how can this performance measure
expect that an EMS provider on a small service will have an opportunity to demonstrate a
pediatric equipment skill even once every two years in a field encounter? The proposed
metric is biased against these small services. Adjusting the numerator to a score of ‘6’ or
more on a 0-12 would allow the small services to be included in a realistic goal of
strengthening the health workforce.
3. Recommend developing a list of pediatric equipment to illustrate the type and scope of
pediatric equipment that may be considered when answering the proposed survey
questions. The creation of this list will assist in defining the “process”.
The following list is an example of pediatric specific equipment that might be used in this
performance measure. With the wide variety of protocols, and skills among EMS in the
nation, the equipment competency should have a strong focus on the ABC’s.
Examples include:
BLS:
1. Oro- and Nasopharyngeal airways
2. Suctioning - tips and catheters and bulb suction
3. BVM- selection mask and bag sizes
4. Supraglottic airway
5. AED
6. IV and IO
7. Weight/ Length-based Tape
ALS:
8. Endotracheal Tubes
9. Manual Defibrillator and synchronized cardioversion
4. Recommend clarifying the use of standardized courses (PEPP, PALS, APLS, and EPC)
and the use of the National Registry of EMT’s Continued Competency Program (CCP) in
the services “process”.
Since many services include standardized classes/courses in their continuing education
requirements and these courses include the demonstration of pediatric equipment case
scenarios, it is recommended that theses programs be recognized and included in the
definition of a “process”.
In addition, the number of states utilizing the National Registry of EMT’s Continued
Competency Program (CCP) for recertification is increasing. As the National Registry
specifically requires skill verification by the service training officer/supervisor, it is
recommended that the use of CCP recertification program to verify pediatric specific
equipment skills be acknowledged and allowed in the definition of “process”.
EMS services have already integrated various methods of pediatric skill verification. Do
not penalize the services by eliminating standardized courses and the CCP recertification
process.
NH EMSC PM Recommendations

January 5, 2016

The following table reflects the discussions by members of the University of
North Carolina Gillings School of Global Public Health Center of Excellence and the
National MCH Workforce Development Center.
PM #
LC1

LC2

LC3

CB1
CB2

CB3
CB4

CB5

CB6

T1

Comments
Lifecourse/Cross Cutting
Tier 3 activities are relevant to training grants. It is not clear, however, how to
measure the # receiving TA training or the # receiving
professional/organizational development training.
The Data Collection form should be illuminating overall.
While important, individual training programs may or may not have any
individuals directly engaged in tobacco cessation. We assume this activity is
not an expectation for all programs.
While important, individual training programs may or may not have any
individuals directly engaged in oral health. We assume this activity is not an
expectation for all programs.
Capacity Buiilding
This measure captures reasonable domains. The metric, i.e., # of
participants, exhibits the same challenge as described for T8.
This measure captures reasonable domains. The metric, i.e., # of
participants, exhibits the same challenge as described for T8.
Note that Injury Prevention is duplicated in the list on page 41.
This is a useful and valuable measure.
Sustainability is relevant in certain projects and not in others. This should be
made clear. For example, some projects are meant to be demonstrations or
tests without any sustainability intent. More importantly, sustainability
capacity differs based on the inherent activity. For example, an important
dimension of the public health training programs is that they are a “public
good,” meaning that beyond students and participants in technical
assistance, the contributions cannot be limited to users and the contributions
are not depleted if more users take advantage of the education and research
produced by the programs. While it is important for training programs to
attend to developing resources, the goal to be independent of MCHB or
government support at some level does not seem reasonable.
Articles and in press seems much too narrow. The universe of scholarly work
is much broader. Scholarly products, including official reports, monographs,
etc.
This measure is closely related to CB5. It would be more illuminating to
create a single measure that clearly captures the domains of scholarly work.
Division of Workforce Development
Useful PM. Each of the 5 items are valuable for programs to think about, but
it’s not clear that there will be much variation in the table of metrics, given
yes/no responses. This is not to suggest that the effort to further delineate
these categories would be worth it, however.
1

T2

Useful PM. Each of the 6 items are valuable for programs to think about, but
it’s not clear that there will be much variation in the table of metrics, given
yes/no responses. This is not to suggest that the effort to further delineate
these categories would be worth it, however.

T4

The Significance is missing a sentence. MCHB places special emphasis on
improving service delivery to women, children and youth from communities with
limited access to comprehensive care. One goal of pipeline programs is to
increasing the pool of students who seek to provide services to the MCH population.

T6

T7

T8

T9

T12
T13

The data collection form seems restrictive. We would consider it a success if
pipeline graduates bring insights about the MCH population to whatever
professional setting they are in, even if not strictly defined as an MCH
program.
The relevance of the Benchmarks is not clear.
Data Collection Section A: The categories are reasonable. If this PM is
meant to get a snapshot it is useful. If, however, programs will be measured,
either explicitly or implicitly, 2 years is a very short window for demonstrating
meaningful leadership.
Data Collection Section B: Five years seems more reasonable than 2.
The Significance would be appropriate for T4 as previously noted.
A broader definition of diversity would be illuminating: first in family in
graduate school, gender identity, first generation in U.S. are some examples.
The use of these Benchmarks is not clear. The Significance is clear.
Data Collection contains a reasonable set of types of activities. The
quantification of activities is a problem, however. For example, the process
count of the # of activities can be interpreted for a statewide training of all
local health departments on a particular topic to be 1 collaborative CE or TA
activity – which could be reported similarly if it was a training directed at the
State Health Department (1 activity) or at an interdisciplinary group of MCH
stakeholders (1 activity). The metrics does not capture the magnitude of
potential or actual impact on the practice of MCH or the potential to actually
affect population outcomes in MCH. We appreciate that the Bureau is
challenged to ‘quantify’ these measures, but we lose much in the translation.
The Significance is unnecessarily narrow, because care implies clinical care. At a
minimum, the wording should be changed to “care/services” or “care/practice.”

The Data Collection captures important dimensions of interdisciplinary
practice. Ideally, the question would be time-limited. For example, “during
the past 3 months, how often have trainees sought information from other
professions or disciplines.” As the question stands, all the responses are
likely to be very high.
While we appreciate the value of 10 year follow-up, the costs of ascertaining
this information are quite high, especially when considering the 5 year
duration of the training grants.
Straightforward and valuable measure
Straightforward and valuable measure

2

Core1
Core2
Core3

Core
Grant impact is clear and appropriate.
QI is clear and appropriate.
Health equity is an important measure. The Tier 2 items do not capture the
breadth of this domain. For example, factors like first in family to attend
school, first generation in the U.S., and other examples of social
determinants would enrich the picture provided by this measure

3

Comments from S Jean Emans, MD, PI of Boston LEAH Program (T71 MC00009)
Performance Measure

Topic

Emans Notes

Adolescent Health
AH 1

Adolescent Well Visit

I am not sure if AH1 is intended to be a LEAH
measure. If the domain is assigned to LEAH, I would
recommend requesting data for Tier 1 and 2 only.
The Tier 2 list would benefit from using the same
categories as the other 2 PMs in this domain and
the inclusion of some other metrics. For example,
in addition to peer-reviewed publications, products
should include invited reviews, commentaries,
chapters and other scholarly works, many of which
have significant impact on the field. The category
Outreach/Information Dissemination/Education
might be split into Education to include Learning
collaboratives and CME/CEU/CE and Outreach to
include work with professional organizations. To the
last category Referral/, I would add “Access.” A new
category on Research/Program Development and
one on Outcomes such as Chlamydia screening
would help capture components of the well visit.
Although it might seems simple to know how “many
are reached,” these data are not available and
would require significant funding and new
methodology to begin to estimate. Currently,
programs do not know how many individuals
actually receive information through education or
outreach. Similarly for Tier 4, the enrollment should
include all teens; all insurers could be encouraged
to report this information directly to state MCH
programs. Further discussion might be helpful.

1

AH 2

Injury Prevention

AH 3

Screening for Major Depressive
Disorder

2

As above, I am not sure if LEAHs will report on any
of the elements of AH 2. If helpful to MCHB,
reporting on tier1 and 2 would be feasible whereas
gathering data for Tier 3 and 4 would require a shift
in methodology and significant resources either
added or diverted from training. In Tier 2, I would
match to the other 2 PMs in this domain and add to
Research “Program Development.” For the second
section of Tier 2, I would add to “Motor Vehicle
traffic” a word such as “accidents” or “Policy” or
“DUI”. “Traumatic Brain Injury” should include
“Concussion” and a category to include “Opioids”
added. “Youth violence” should include “Intimate
partner violence” or “Dating violence”. The age
ranges are different for well visits and injuries but
likely related to current Data collection systems. If
completed by LEAHs, the form on page 30 would
need to use “Yes/No” checkboxes but not numbers
of those reached (see above).
As in two PMs above, I am not sure if LEAH will be
reporting this PM. If helpful to MCHB, the reporting
should be restricted to Tier 1 and 2. The Tier 2 list
would be similar to categories in this domain of 3
PMs. On Tier 4, “treatment” needs to be defined
and sources of data identified since state
administrative data would be missing services to
youth provided under self pay and likely other areas
as well. In addition, the wording of the current PM
only indicates “screening” and not “treatment” and
would need editing if broader goal desired.

Capacity Building
CB 1

State capacity for advancing the
health of MCH populations

CB 2

Technical Assistance

CB 3

Impact Measurement

CB 4

Sustainability

3

The comments for this section are similar to those
for the adolescent health domain above. If LEAH is
included in this PM, I would restrict to reporting of
information for Tier 1 and 2. Tier 2 would benefit
from an “Other” category. LEAHs would need
significant resources to provide estimates for Tier 3
or Tier 4. Tier 3 and 4 are best answered by an
adolescent health information center or developed
internally at MCHB.
TA is currently reported and would be easier if in
both Tiers 2 and 3 the “check all that apply” were
available. As noted in AH1, estimating “how many
are reached” is not data currently available because
of the ripple effect. If completed by LEAHs, the
table on page 42 would need to use “Yes/No”
responses rather than estimates. Do
“participants/public” include Youth/Families or
Schools?
The overall statement is good and helpful for LEAHs
using Tier 1 and 2, although the categories in Tier 2
would need additions to be relevant to goals,
including leadership positions of trainees, products,
CE, etc. If training grants are assigned Tier 3, then
there are additional categories to add such as
return on investment, focus groups, trainee
feedback, qualitative analysis, and “Other”.
Not/Applicable to training programs. MCH is the
only funding source for Adolescent Medicine
training and for interdisciplinary training – a very
important focus.

CB 5

Scientific Publications

CB 6

Products

4

I believe that the wording of the PM would benefit
from including scholarly contributions – ie “the
percent of programs supporting scientific discovery
and scholarly products” (could also use “scholarly
contributions”). Tier 1 would then need to be
reworded to match PM. The Tier 2 phrasing should
also be reworded to reflect changes to Products and
Publications (see below). I would delete
“submitted” and include those published
electronically or in print. If an articles is epublished
as a final product or “epub in advance” or “in
press,” the required categories on the MCH
collection form cannot be used. Other mechanisms
for Tier 2 include funding conferences, teaching
writing skills, resources for publication charges,
time, academic promotion, and mentorship.
Similarly, the number “reached” in Tier 3 is
unknown. Tier 4 should include “check all that
apply” and add websites, professional
organizations, books, chapters, reviews, lay
organizations, and “Other.”
For Tier 2, the wording “with grant support” needs
to be clarified, or preferably deleted. Most
products from training grantees are dependent
upon faculty and trainees who may not be
supported directly by the MCH grant but benefit
from the role the LEAH funding plays in creating the
overall interdisciplinary environment for success.
Thus many of the projects and products include
indirect funding but not direct MCH funding. To the
Tier 2 list, reviews, commentaries, etc should be
added to Reports and monographs as noted under
forms (see pages 13-14). Tier 3 “how many are
reached” is unknown.

Core
Core 1

Grant Impact

Core 2

Quality Improvement

Core 3

Health Equity – MCH Outcomes

5

Since the PM relates to meeting aims at the “end of
the current grant cycle,” I interpret this to imply the
question needs to be answered once every 5 yrs.
While this interval is simple, I would prefer to also
capture progress toward goals and objectives and
changes in direction or programs undertaken
because of changes in technology, state/federal
legislation, payment models, etc. Interim
assessment is captured annually in section C. of the
narrative so perhaps duplicative.
Currently QI initiatives are required by hospital
accreditation organizations, residency and
fellowship Boards, American Board of Pediatrics for
recertification, payors, and others. Thus the
requirement would be easily met by clinical
programs but may not be applicable to SOPH and
research grants, For Tier 2 for both structure and
aims, “check all that apply” needs to be an option
and “Other” added. Similarly for Tier 3
methodology, “check all that apply” is important.
For Tier 4, I would combine to one question “Are
there data to support improvement in population
health, clinic or organization metrics and processes
as a result of QI activities?” An example could be
included in the narrative.
This measure seems particularly applicable to
clinical programs. Perhaps for SOPH, the text could
add “teaching” – “Are you promoting, facilitating, or
teaching about health equity..” If applicable for
research grants, further rewording is needed. For
Tier 2, MCHB may wish to combine topics such as
race/ethnicity, gender/sex/sexual orientation,
urban/rural/suburban, etc. “Check all that apply”

should be added. Tier 3 – “has the program set
goals” - may depend upon type of program and
similarly for “met goals” the wording suggest this
data are measured annually in contrast to the
earlier Core 1 metric which uses the phrase “at end
of grant cycle”. Table 1 page 51 should add a
column for Professional Organizations/Universities.
Particularly important, this measure needs
explanations and examples of these titles so that
everyone filling out the forms is using the same set
of definitions. For training programs (with perhaps
exception of LEND program that receive more
funding), these boxes should be a checkboxes for
“Yes/No” (see page 2). Given the limited resources
for LEAH training, I am hopeful that LEAHs would
not be asked to record the number of services,
referrals or other new data. A full time data
coordinator would be needed to accurately record
and catalog activities of fellows, faculty and staff
and would not add to the fundamental goal to train
leaders and augment the MCH workforce!
Program Specific Measures
Division of Workforce Development
Training 1
MCH Training Program Family
Member/Youth/Community Member
participation

This measure is important for capturing the
involvement of youth, families, and community
members in training grants. The “Yes/No” format is
an improvement. There is likely overlap in the three
categories since youth and family members also
represent the community in many instances and the
overlap could be further acknowledged in the
Definition and Significance sections.
For item #4, I wonder if this item should be included

6

only for grants in which there is a line item for
“compensation.” MCH LEAH grants have been level
funded for 20 years and will need to reduce faculty
FTEs and trainee stipends further. Perhaps this
could be a LEND program item since I believe they
have specific funding for this compensation. That
said, we do compensate our peer leaders because
we want to recruit teens from the local community
who would otherwise need to get a job. In addition,
labor laws also require compensation if
“volunteers” are doing a “job”.

Training 2

MCH Training Program Cultural
Competence

Item #5 might be changed to include trainees and
faculty – “Train MCH/CSHCN staff, providers, faculty
and trainees” unless the PM is meant only for
training state Title V staff.
This PM includes 6 “Yes/No” queries and the shift
from scoring is appreciated.
For item # 3 Data, the title could be more
descriptive if it was changed (from “Data”) to
“Research and Quality Improvement.”
For item #4, I would change the text to “The
grantee has programs (or initiatives) to address the
cultural and linguistic and gender/sex diversity of
faculty, trainees, and staff with goal of matching the
populations served.” For the present, despite
pipeline programs and other efforts, more time and
creative projects and funding are needed for
programs to achieve racial/ethnic/gender/sex
diversity similar to either population percentages or
client percentages.

7

For item #5 Professional Development, text should
add “trainees” – “…Program staff, faculty and
trainees participate…”

Training 6

8

Demonstrate Field Leadership

For #6 Measure Progress, a standard assessment
might be helpful in the future; I would also include
other issues related to diversity including LGBTQ,
disabilities, health literacy, etc. The title of this item
could also change to “Measurement of Progress” to
have parallel titles.
The addition of assessing trajectory of trainees who
are 2 years post MCH training makes sense for a 5
year grant cycle. It is important to realize that some
LEAH trainees may still be in training and working
toward a degree. However, I assume that a student
status can still include leadership activities. To the
list of “disseminated information…” I would add to
the list in parentheses “reviews, commentaries, and
chapters” pages 70 and 72 under #1 bullet 1. If
Disseminated information is the same in the other
sections, do respondents get credit for more than
one category? I wonder with the concerns about
“lobbying” versus education whether the advocacy
activities need more careful phrasing. There is a
fine line between educating and trying to influence
MCH-related legislation. On page 71, should the
text in item 3, last bullet say “influenced legislation
for the benefit of MCH populations” rather than
“MCH related legislation”? The biggest issue for this
PM is the overlapping definitions which either could
be changed or perhaps it would be easier is to leave
the same and in the Introduction to the section, let
the respondents know that they may be checking
off the same text under more than one category.

Training 7

Diversity of Long-Term Trainees

Training 8

(Title V) Collaborative Interactions

Training 9

9

Long-term Trainees: Interdisciplinary
Practice

This measure is fairly straightforward to fill out with
one exception: the element “2 or more races”
prevents recording the race of the trainee. For
example, if a trainee is Black and Asian, he/she will
not be included in the Black (or Asian) percentages
if placed in the “2 or more” category. This could be
fixed if the “2 or more” was a stand alone “Yes/No”
question, but would produce minor discontinuity in
MCH data collection.
I am worried that this measure will significantly
increase time spent by training project grantees in
data collection and ascertainment of State Title V
versus MCH-related programs since funding of
various initiatives may come from multiple sources.
In addition, each category will need examples of
what counts as “activities” to try to promote clarity
in definitions. The definitions of TA could also be
further explored; it is unclear why needs
assessments “of consumers of training program
services” are not included since presumably they
are part of MCH population and may provide
valuable feedback on services needed.
To keep the time spent in data collection and entry
for projects sustainable, I would favor “Yes/No”
responses and examples in the narrative, not adding
the number of activities in this next grant cycle.
I agree that adding follow-up at 2 years makes
sense given the 5 year cycles. For the trainees, I
assume the list will say “check all that apply.” Thus
the categories will add up to more than 100% but
the use of the term “at least one…” should be easily
translated to number and percentages for work in
interdisciplinary manner. The item with the phrase

Training 10

Diverse Adolescent Involvement
(LEAH-specific)

Training 12

Long-term Trainees Working with
MCH Populations

10

“Utilized that information ….” could benefit from
rewording since not clear what is intended. The
next item would benefit from “Promoted” or
“Facilitated” decision-making rather than
“Established.” I would also suggest adding an item
that encompasses research, quality improvement,
and program development e.g “Promoted
interdisciplinary collaboration in quality
improvement initiatives, research projects, and
program development…” Lastly, an item should
address technology such as “Developed methods to
communicate with interdisciplinary teams using
technology…” or “Clarified utilization of information
with interdisciplinary team to promote
collaboration..”
I am worried that this measure by adding
“activities” will significantly increase time spent by
grantees in data collection and ascertainment of
how to count "activities." I would suggest “Yes/No”
and examples in the narrative. I would suggest that
the word “parent” in the second and fourth items
be replaced by “parents/families/guardians” to
make the PM more inclusive.
The trainee grads answering this survey often do
not understand the meaning of “MCH populations”
so the definition on page 89 should be included in
the survey and an open ended question such as
“Tell us what you have been doing since
graduation” included.

Training 13

Policy Development,
Implementation, and Evaluation

The “Yes/No” format works well. Advocacy versus
education should be defined so lobbying is
excluded. For item #2 (6th bullet) the word “nonscientific” should be deleted since all writing should
have a scientific or evidence-based perspective.
Item #2 (8) consider alternative wording such as
“track a bill using credible Internet sites…”
Item #3 – because of the variable time in programs
(a few months to 3 years), it would be helpful to
define timing of post-assessment and 2-3 validated
questions.
For #4-6, the local, state, national should be “check
all that apply” since often overlapping.
For item #5 I would suggest defining what is meant
by “MCH advocacy networks” and make sure not
lobbying.
For #6 I would add, “communicating research
findings, program development, QI, qualitative
studies and focus groups, etc…” and delete “(both
original and non-original)”.

Forms

11

Technical
Assistance/Collaboration
Form

These forms would benefit from some clarification and definitions of an “activity”. I assume
that TA activities can have more than one recipient. The forms should also allow the project
to check more than one target audience and more than one location. Title V could include
all other labels – ie TA could be “Title V”, “within state”, and “national”. Should Title V be an
additional primary target audience?
List A – we recommend adding “Other” and/or “Emerging Issue” and also “youth
Involvement”
List B- Topics to be considered for inclusion are substance abuse, health disparities,
cultural/linguistics competency, faculty development, case development as well as “Other”
and/or “Emerging Issue”
Recipient of TA/Collaborator – add “Other”?
To address the following question in the narrative, “C. In the past year have you provided
technical assistance on emerging issues that are not represented in the topic list above?
YES/ NO. If yes, specify the topic(s):__________________________,” the data need to be
collected through the use of “Other/Emerging Issue” in A. and B.
Are we collecting the total number of recipients for TA activities? As noted above,
measurement of “number of people reached” in CB 2 is not possible with current resources
and would benefit from further study and discussion. Some activities have 1 person
reached, some have 200. For the Target audience, it is important to be able to “check all
that apply.”

Continuing Education
Form

12

The form would benefit from defining an “activity” and multiple examples provided.
For List A: Add “youth” to family involvement.
See above – need to add “Other” and/or “Emerging Issues” options to answer question on
emerging issue.
I actually liked the 5-10 most noteworthy CE and the ability to highlight emerging issues and
other activities but this section could be in narrative.

Products, Publications and
Submissions
Data Collection Form

This title of this section “In Press peer-reviewed publications in scholarly journals” needs to
be renamed as either “Published…” or “Published and in press…” because otherwise there is
no section for “published” articles, and the “in press” (i.e. accepted but not published)
articles do not have the required data elements of vol/page numbers for this section. In
addition, many articles are published electronically first and then in print, others just
electronically and the citations do not include the elements on the data form. I would
suggest this category be limited to “published” and the data fields be limited to two - year
and “citation” -- to deal with the changing landscape of epublications.
Missing entirely from this form are non-peer reviewed, published and often invited and
edited review articles, commentaries, editorials, etc. which can have a huge impact on the
field and the clinician and public health workforce. There could be a separate category or
these could be added to “Reports and monographs” or just change the above first category
to delete the word “peer-reviewed” and rename as “Published publications…” or “Published
and in press publications’. I would favor changing to published articles that include both
peer-reviewed and invited articles, but two categories is also fine.
The proposed data entry forms also further split into “primary author… published” and
“contributing author… published”, a distinction that does not have a good definition, is not
currently included in CVs, and could result in duplicative entries for articles in which there
are both contributions as primary and contributing authors from the training grantee.
I would delete “Submission(s) of peer-reviewed publications to scholarly journals” since
being rejected has the potential to overinflate the number of articles. If this category is
important for MCHB, I would favor a simple count – ie entry of a number such as
“Submissions: 12” – with no further data entered.
It would be beneficial and save time if the “to obtain copies (URL)” for publications, reports,
and posters were optional, deleted or defaulted to Pubmed or Google or other search
engines; alternatively the field could be optional and the project could enter other
information if desired. Books are easily found through Google and Amazon search engines
so the field should be optional. Unpublished (and submitted) articles cannot be shared or
publishers will not accept the article.

13

The Conference presentations and posters presented category may be duplicative of CE data
collection. Data are counted in both categories via different information.
Web-based products: It would be helpful to add a category that would capture health
guides, as they are similar to blogs, podcasts, video, individual products
Press communications: We recommend adding online interviews. This will allow reporting
of interviews done for online articles. There is rarely a title for an interview so this field
should be optional.
Newsletters: the forms for newsletter needs clarification. Is each issue, each year, etc
reported? For example, a newsletter might be weekly or twice a year or other frequency
and the dates may be 2014 and 2015. Is each newsletter counted or just entered as two
entries. In the reporting period of July 1, 2014 – June 30, 2015, are there 2 entries for the
newsletter with different years.
Distance Learning Modules: How to differentiate between these and web-based
products/electronic products? Sub-categories are over-lapping and some entries could be
reported in both categories.

14

New York COMMENTS to EMSC Performance Measure Detail Sheet published
in the Federal Register /Vol. 80, No. 215 / Friday, November 6, 2015
EMSC 01: The degree to which EMS agencies submit NEMSIS compliant version 3 data to
the State EMS Office for submission to NEMSIS Technical Assistance Center.
GOAL: By 2021, 90% of EMS agencies in the state submit NEMSIS 3 data…
NY COMMENTS
NY recommends the goal should be 90% of the call volume, not 90% of EMS agencies. 90% of the
call volume is a more realistic and achievable goal for states to meet as many EMS agencies are so
small with very little call volume (and EMS personnel), and staffed with volunteers, that incurring
the expense to purchase and maintain the software and hardware needed to collect data
electronically is too much of a burden both on a personnel level (to maintain agency compliance,
file submission, as system maintenance and staff training) as well as financial. Additionally, in NY,
small agencies that are still using paper patient care reports, their data is entered in NY’s NEMSIS
data electronic repository through a contracted vendor who key punches the data. Therefore in NY,
smaller agencies’ data is captured in an electronic NEMSIS format without having those small
agencies incur the cost of an electronic data system. NY would not meet this proposed measure,
despite having >90% of the data in an electronic format.
This proposed Performance Measure is a missed opportunity to collect quality pediatric data on a
national level. By only requiring NEMSIS 3 submission it does not ensure quality data as data
submissions can be sent with null variables. Also, almost all states are already on track to move
from NEMSIS 2 to NEMSIS 3. What is needed is a goal to ensure states are receiving ‘good’ data
through validation and scoring of data transmission to the state. HRSA/MCHB should identify
specific NEMSIS data elements to monitor/evaluate (with the goal of examining outcomes) and
then set a Performance Measure to ensure validation and scoring of those identified data elements.
By doing this, NEMSIS TAC would receive version 3 data elements (by virtue of identifying
specific NEMSIS version 3 elements) as well as ensuring better, quality data is being submitted.
By requiring NEMSIS submission, HRSA is imposing an unfunded mandate and thereby a burden
to EMS services. This is an issue for NHTSA to work out with states, not for HRSA/MCHB to
require of its grantees.

EMSC 02: The percentage of EMS agencies in the state that have a designated individual who
coordinates pediatric emergency care.
Goal: By 2026, 90% of EMS agencies in the state have a designated individual who
coordinates pediatric emergency care.
NY Comments:
The “Recommended Roles” listed for a Pediatric Emergency Care (PEC) Coordinator in an EMS
agency is more extensive than the roll of a PEC Coordinator in an Emergency Department and yet
this is an unfunded addition/position and burden especially to voluntary EMS agencies.
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As stated previously, in the very small, voluntary EMS agencies with very low call volume (<50
calls/year) who are finding it difficult to even staff an ambulance, it is unrealistic to assume a PEC
Coordinator with all the recommended roles, This, and the previous Performance Measure, assumes
most EMS agencies are large, robust entities- most of which are not. If this Measure allowed for a
regional model for a PEC Coordinator, rather than only at the agency level, it would allow for the
pooling of resources for resource-poor EMS agencies. Many states, like NY, already use a regional
model and could more easily incorporate resource intensive initiatives like this, when resources are
pooled. Also, utilizing a broader, regional model also assists with consistency, and quality
assurance which, for larger states, is an issue. NY has 1,200+ EMS agencies and 18 EMS regions
and strives to maintain quality and consistency; a more consistent, coordinated program can be
disseminated to/from 18 regions rather than to 1,200 individual EMS agencies.
Additionally, we know of no state that allows individual EMS agencies to develop their own
protocols (first bullet under Recommended Roles). Protocols are developed at the state or regional
level. Asking EMS agencies when surveyed if “the [PEC Coordinator] ensures the pediatric
perspective is included in the development of EMS protocols” makes the states and HRSA/MCHB
look ignorant to the EMS protocol development process.

EMSC 03: The percentage of EMS agencies in the state that have a process that requires EMS
providers to physically demonstrate the correct use of pediatric-specific equipment.
Goal: By 2026: 90% of EMS agencies will have a process that requires EMS providers to
physically demonstrate the correct use of pediatric-specific equipment which is equal to a
score of ‘8’ or more on a 0-12 scale.
NY COMMENTS
Like the previous Performance Measure, the scoring method with the proposed rubric is unrealistic
for smaller, voluntary agencies. The evaluative rubric states a provider must demonstrate his/her
skill in each of the three methods (skill station, case scenario and field encounter). A voluntary
EMS provider for a small volume agency may never see a pediatric patient within a year (or two or
three) therefore requiring EMS providers to demonstrate skills via a field encounter is not realistic
or achievable. Has the rubric been validated? In the HRSA/MCHB webinar, HRSA/MCHB
referenced the Lamer, et al. paper that states a paramedic treats a teen on average once every 625
days, a child every 958 days, and an infant every 1087 days. Using this cited reference, how can
this Measure expect that an EMS provider will demonstrate the skill even once every two years in a
field encounter, or more frequently- annually or biannually as the rubric requires?
Additionally there is concern at the state level of the competency or credentialing of the person who
is evaluating EMS providers’ use of equipment. In NY, education and training of EMS providers is
controlled at the state level and an educator has to go through state training to become a Certified
Instructor who can then (after going through Certified Instructor training) attest an EMS training is
to a core standard. This proposed Performance Measure would allow a non-certified instructor to
attest to a provider’s competency without knowing the competency of that evaluator. Please note:
Training providers in NY with Certified Instructors is tied to funding (EMS trainings are paid for by
the state). If the Measure were changed to require “approved” instructors (or a state like NY were
to require certified instructors be evaluators) this Measure would then create a financial burden and
thereby another unfunded mandate.
New York COMMENTS to EMSC Performance Measure Detail Sheet

Page 2 of 3

EMSC 04: The percent of hospitals with an Emergency Department recognized through a
statewide or regional standardized system that are able to stabilize and/or manage pediatric
medical emergencies.
Goal: By 2017, 25% of hospitals are recognized as part of a statewide or regional
standardized system that are able to stabilize and/or manage pediatric medical emergencies.
NY COMMENTS
The minimum percent threshold (25%) to meet the goal is arbitrary and not validated. According to
the “National Quality Forum’s Evaluating Regionalized Emergency Medical Care Systems Using
an Episodes of Care Approach” which is cited by HRSA/MCHB in its SPROC FOA:
“…the framework provides a conceptual model for emphasizing the evaluation of emergency
medical care within a population or geographical region, rather than within an individual
facility or single part of the system. Although earlier measurement efforts have focused on
discrete parts of a system, new models should focus on evaluating the integration of the discrete
service units that make up a system, and how the entire system performs. Thus, a major goal of
this framework is to provide the context for evaluating the system as a whole, rather than just its
component parts..”
Nowhere in this statement, nor the remaining report, does it state the number or percentage of facilities
in the system is relevant. The goal for this Performance Measure should be whether or not the state has
a developed system (yes or no) along with the continued use of the ‘scale’ to determine where states are
in the process of developing a system.
Since EMTALA requires all EDs to be able, at a minimum, to stabilize and transfer patients, if NY were
to create a designation of pediatric hospitals, NY would not include/designate hospitals with EDs that
only stabilize and transfer pediatric patients in its regionalized system since it’s a baseline standard; NY
would recognize higher level pediatric-capable hospitals. Therefore NY would not meet the 25%
threshold, as it would need 48 out of 190 hospitals to meet this Measure, and realistically the system
could not support this excessive number of pediatric hospitals.

EMSC 05: The percent of hospitals with an ED recognized through a statewide or regional
standardized system that are able to stabilize and/or manage pediatric traumatic emergencies.
Goal: By 2017, 50% of hospitals are recognized as part of a statewide or regional
standardized system that recognizes hospitals that are able to stabilize and/or manage
pediatric trauma.
NY COMMENTS
The minimum percent threshold (50%) to meet the goal is, like the previous Performance Measure,
arbitrary, invalidated, and excessive especially for larger states. For example, NY has 8 pediatric
trauma centers (4%) as verified by the ACS, and with our regionalized system feel this is sufficient
geographic and coordinated coverage in NY. A 50% threshold would require 95 hospitals in NY to
be designated (out of 190) to meet this measure. 95 hospitals is not a coordinated, regionalized
sustainable system that can be supported (nor is necessary). As with the previous performance
measure, the number or percentage of hospitals should not be the evaluative measure.
New York COMMENTS to EMSC Performance Measure Detail Sheet

Page 3 of 3

Title: Comments to HRSA Maternal and Child Health Bureau performance measures for grant programs
(The performance measures that we responded to are attached in the email)
State: New York State
Date: January 5, 2016
Summary: Below, we describe some of the data sources that New York State would use if asked to
report on these performance measures. The measures most difficult to report on are those that include
promotion and outreach (Tier 2 and Tier 3). Currently, there is not a statewide system that tracks
promotion and outreach in these areas. We do see the benefit of this data collection but struggle with
how to collect statewide.
Additionally, when talking with our MIECHV partners, we were alerted that some of the outcome
measures overlap with the new proposed MIECHV benchmarks. Example: there is some overlap
between the Tier 4 outcome measures and some of the new MIECHV benchmarks HRSA proposed (yet
to be finalized). This would allow New York State to provide aggregate data about MIECHV clients for
those measures. However, there could be a problem if the reporting periods are different. MIECHV
reports on the federal fiscal year (10/1-9/30). If these measures report on a different reporting period it
would require two separate analyses and that would be very burdensome.
Comments on specific measures:
PIH 1
Safe Sleep
Perinatal Infant Health
Home visiting (HV) programs provide information about safe sleep and connect clients to resources to
create a safe sleep environment. Additionally, licensed and regulated providers must receive training on
safe sleep, as per requirements of the New York State Office of Children and Family Services (OCFS). To
collect Tiers 2 and 3 would require a new data collection method—not currently collected. There is
however a group of Infant Toddler Specialists in New York State that could pull some of this technical
assistance data on safe sleep from their own data collection system, but it is limited. The first measure in
Tier 4 is part of a composite measure that’s been proposed for the new MIECHV benchmarks so New
York State would have that information for MIECHV-funded sites. The second measure in Tier 4 could be
collected by reviewing past violations of a program.
PIH 2
Breastfeeding
Perinatal Infant Health
HV programs promote and facilitate breastfeeding through prenatal education and postpartum support.
Tiers 2 and 3 are not currently collected from our MIECHV providers. Again, there is a group of Infant
Toddler Specialists in New York State that could provide some data on technical assistance (re:
breastfeeding) but it is limited. Both Tier 4 measures are collected by Nurse Family Partnership and
Heathy Families New York. The second measure is the same as the proposed MIECHV benchmark
regarding breastfeeding.
Page 1 of 4

Breastfeeding data is also collected in all CACFP programs, and program violations are also a good
indicator. There are also Referral Specialists of the Child Care Resource & Referral agencies in New York
State that would have some data on parents asking for breastfeeding programs.
Lastly, a new training is being developed for Child Care Health Consultants that will address the
importance of breastfeeding (expected date: February 2016) and therefore outreach data will be
collected.
PIH 3
Newborn Screening
Perinatal Infant Health
Newborn screening program is not explicitly part of the HV curricula, so our MIECHV partners would not
have this data, nor would our other available sources. This would be difficult to collect, although
important for New York State.
CH 1
Well-Child Visit
Child Health
HV programs promote the importance of well-child visits and will assist clients to find providers or make
appointments if necessary. Tiers 2 and 3 are not currently collected. Both Tier 4 measures can be
reported using MIECHV data, but will be based on parental self-report. MIECHV benchmark is different,
measuring the children receiving the recommended number of well-child visits based on age.
CH 2
Quality of Well-Child Visit
Child Health
This would be difficult to collect, although important.
CH 3
Developmental Screening
Child Health
Home visitors administer developmental screenings with clients and their children and will make
referrals when necessary. Tiers 2 and 3 not currently collected. Tier 4 could be reported for MIECHV
index children, but not up to 71 months because Nurse Family Partnership ends at 24 months and
Healthy Families New York ends at 60 months of age. The measure is similar to the MIECHV benchmark,
which looks at 1 screening by 9 months, 2 by 18 months and 3 by 30 months.
Additionally, the Child Care Resource & Referral agencies are now surveying providers who do
developmental screening. The Early Intervention group might also have this information and other
individual child care programs. The CCDBG will make this more prominent and programs will have to do
this.
CH 4
Injury Prevention
Child Health
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HV programs provide information about child safety and injury prevention at multiple times during
program involvement. Tiers 2 and 3 not collected, but could probably check which child safety domains
HV programs address. The Child Development Associate Credential (CDA) also has modules on injury
prevention so outreach data could be pulled from here. The first measure under Tier 4 is collected by HV
programs but based on parental self-report. As mentioned above, the HV programs do not serve
children to age 9. The second measure under Tier 4 is for children outside the age range served by
MIECHV HV programs.
Additionally, child care programs do not focus specifically on this. Information could be collected by
violations detected by the Office of Children and Family Services and injury rates. Supervision
requirements could also be looked at.
Lastly, a new training is being developed for Child Care Health Consultants that will address the injury
prevention (expected date: February 2016). Outreach data could be analyzed.
CB 1
State capacity for advancing the health….
Capacity Building
This is somewhat of a confusing section.
CB 2
Technical Assistance
Capacity Building
Some of this could be covered by the Office of Children and Family Services and CACFP training
requirements, but a challenge to collect.
CB 3
Impact Measurement
Capacity Building
Possible data sources would include:
• Early Care & Learning Council – Child Care Resource & Referral (CCR&Rs) statewide coordinating
agency (CCR&Rs are required to do surveying)
• Infant Toddler Specialists
• Department of Education - Regional Early Childhood Protection Centers
• UPK and early UPK
• Headstart
This would be difficult to collect because there are different systems across the state.
CB 4
Sustainability
Capacity Building
New training developed for Child Care Health (expected date: February 2016). Training modules and
updating of website, supported by ECCS funds, will be available and ongoing.

Page 3 of 4

CB 5
Scientific Publications
Capacity Building
Not much here. This really isn’t a focus of HV and the ECCS grant.
CB 7
Products
Capacity Building
New training developed for Child Care Health (expected date: February 2016). Training modules and
updating of website, supported by ECCS funds, will be available and ongoing. Blogs have also been
written for Child Care Health Consultants. Many state agencies/entities, such as Docs for Tots, the Early
Childhood Advisory Council, Early Care & Learning Council, NYS Zero-To-Three all do publications. This
would not be difficult to track, but time-consuming.

Page 4 of 4

Family-Led Organization Comments on FR DOC#2015-28264
Information Collection Request MCHB Performance Measures for Discretionary Grants
Attn: HRSA Information Collection Clearance Officer
Submitted electronically through [email protected]
We thank you for the opportunity to comment on the information collection request on the
Maternal and Child Health Bureau Performance Measures for Discretionary Grants. Family
Voices is a national, family-led organization that promotes quality health care for all children
and youth, with a specific emphasis on those with special health care needs. Most of the
signatories to these comments serve as their state’s Family to Family Health Information Center
and Family Voices State Affiliate Organization; several are also Parent Training and Information
Centers, Parent to Parent USA Affiliate, and/or Federation of Families for Children’s Mental
Health Chapter.
Our comments are based on our extensive work with families of children and youth with special
healthcare needs (CYSHCN) as well as the experiences of our own staff, most of whom are
parents of children with special needs. Furthermore, our comments are based on our experience
with systems of care and best practices in serving families of and children with special health
care needs, and we believe performance measures in other domains can benefit from the
CYSHCN model. Our comments are as follows:
Comment Area 1: The necessity and utility of the proposed information collection for the
proper performance of the agency's functions
In general, we support the stated need and proposed use of the information sought for the proper
performance of HRSA and MCHB’s functions. We agree that the use of scale-based measures to
convey program impact can tend to be limiting, and we generally support the structure of the
proposed DGIS performance measures in providing a more thorough assessment of impact. We
believe that this revision will enhance reporting and convey a more accurate picture of the
diverse services that DGIS grantees provide.
Comment Area 2: The accuracy of the estimated burden
We agree with the agency’s estimate of 41 burden hours per respondent for a total of 28,700
burden hours across all reporting discretionary grantees, except for Family to Family Health
Information Centers, some of whom do not have sophisticated data collection and reporting
systems and therefore this data collection and reporting may take them much more than 41 hours.
While we support the structural change in how grantees will report compliance with new
performance measures, we also believe that the new revisions create a justification for this
significant increase in estimated burden hours per grantee. We feel that the increased specificity
of the data that each grantee must provide on performance measures, in addition to providing
narratives on annual grant reports, are adequate grounds for the increase in estimated burden
hours. However, we note that the data collection required of F2Fs for a grant that is much
smaller than the usual MCHB discretionary grant is comparatively much larger and burdensome
than that required of larger grants and grantees that usually have more sophisticated data systems

1

Comment Area 3: Ways to enhance the quality, utility, and clarity of the information to be
collected
In general, we support the overall framework for the updated DGIS Performance Measures. In
particular, we support the alignment with already existing Title V Performance Measures in
order to create a more cohesive picture of MCHB’s overall purpose and impact. We believe that
alignment of priorities across Title V, Home Visiting, Healthy Start, and Healthy People 2020
will not only provide more useful, comparable data across MCHB, but will also provide
discretionary grantees with a better project framework for meeting MCHB objectives. However,
we do believe that improvements can be made in order to enhance the quality, utility, and clarity
of these performance measures to ensure the collection of accurate and useful data. Our
comments are as follows:
Domain Specific Measures
Women’s/Maternal Health
Goal 4: Depression Screening (WMH 4)
Under “Tier 4: What are the related outcomes?” the current measurement asks for “% of women
screened for depression using a validated tool”. We suggest that “validated tool” be changed to
“evidence-based tool.”
Already within Program Specific Measures, Division of Healthy Start and Perinatal Services,
Goal 5: Perinatal Screening; the performance measure states “All HS [Healthy Start] participants
should receive a perinatal depression screening using an evidence-based depression tool.” This
distinction is necessary to ensure that grantees are using screening tools that are consistent with
those being used and promoted across all MCHB programs, such as those available through
SAMHSA (Substance Abuse and Mental Health Services Administration). Furthermore, we
believe the distinction “evidence-based” is important in order to promote screening that
combines clinical expertise and scientific evidence with the unique perspectives of patients to
ensure that the needs of the population served are being considered and met.
We also note that, although depression screening tools may be validated for certain populations,
they may not be validated for other racial/ethnic/linguistic groups. We would encourage the
Department to include “culturally and linguistically appropriate evidence-based tool.”
Goal 5: Severe Maternal Mortality/Morbidity (WMH 5)
Under this measure we suggest that an additional level of assessment be added to account for the
specific populations that grantees are targeting in providing training and/or services related to
maternal mortality/morbidity.
According to the American Public Health Association, some of the largest disparities in risk of
maternal death are by race/ethnicity, maternal age, and income (Policy Statement 201114:
Reducing Maternal Mortality as a Human Right). We believe that providing data on the
populations targeted by grantees in this measure will provide MCHB with a more accurate
picture of the communities at greatest risk for experiencing maternal mortality/ morbidity. We
base this suggestion in part on the Improving Pregnancy Outcomes projects of the Statewide

2

Parent Advocacy Network, which target underserved women and connect them with proper
preconception, prenatal, and interconception care to reduce infant mortality. The projects, which
include a focus not only on improving pregnancy outcomes but also on reducing birth defects
and developmental disabilities, specifically target outreach to communities of color, immigrants,
low-income, uninsured women, and other communities at risk for poor pregnancy outcomes. We
believe collecting data on the types of at-risk communities that grantees target will serve to
advance Goal 4 of the Maternal and Child Health Equity Blueprint Draft (p. 15) to increase
access to quality MCH care and reduce disparities in access for underserved communities.
Missing: Access to and Use of Medical Home
We suggest that a performance measure be added to the Women’s/Maternal Health domain to
address promoting and/or facilitating medical home access for women before, during, and after
pregnancy. The presence of a medical home creates a continuum of care for women across their
lifespan—to link preconception care, wellness, and follow-up care later in life. Having integrated
care through a medical home is particularly important for low-income women, women who are
uninsured, and women who exhibit other factors that make them susceptible to poor pregnancy
outcomes (ACOG Women's Medical Home Policy, Principles for a Patient-Centered Medical
Home for Women, February 2009).Though the medical home concept originated with children
and youth with special health care needs, it has become a universal approach to integrated care
for all (Maternal and Child Health Equity Blueprint Draft, p. 8) and we believe it is a crucial
measure for ensuring equity and access to quality healthcare for all women. It is particularly
important to ensure access to a medical home for those women who, by reason of immigrant or
socio-economic status, do not have access to sufficient health insurance coverage.
Child Health
Developmental Screening (CH3)
Under “Tier 4: What are the related outcomes?” we suggest also adding an outcome that assesses
the number of physicians/providers trained to use evidence-based/evidence-informed
developmental screening tools that are appropriate for diverse populations, and who are trained
to use them with diverse populations, including training to communicate effectively with parents
from diverse racial, ethnic, language, and socio-economic backgrounds.
Parents can often be the most reliable source of information when it comes to their children’s
development. Evidence-based screening tools that use parent information can help foster
systematic communication about a child’s development and create a positive relationship
between providers and families (CDC, Developmental Monitoring and Screening for Health
Professionals, November 2015). Promoting developmental screening tools and educating
physicians on screening and referral creates a more integrated system of care that enhances a
family-centered medical home for all children. Ensuring that physicians are trained in effective
communication with families from diverse backgrounds will help to reduce the gap in screening,
follow up evaluation when needed, and access to needed services by addressing the cultural
barriers that too often lead to children from diverse backgrounds being “lost to follow-up” after
screening reveals the need for further evaluation.
It is also important to track actual use of those screening tools as well as age, by at least
race/ethnicity and language, of when potential problems are identified via screening as well as of
diagnosis, if any. This is a critical area of health disparities that can have lifelong consequences.

3

Missing: Access to and Use of Medical Home
We suggest that a performance measure be added to the Child Health domain to address
promoting and/or facilitating medical home access for all children.
A key factor in the evolution of the medical home concept is that it has expanded beyond
children and youth with special health care needs to include all children and adults. Promoting
medical home access for all children, not just CSHCN, is aligned with Healthy People 2020,
MICH Objective 30, to increase the proportion of all children who have medical home access.
Furthermore, this performance measure would correspond with the Maternal and Child Health
Equity Blueprint Draft goals to increase access to quality MCH care (Goal 4, p. 15) and
strengthen MCH systems of care (Goal 5, p. 16). Facilitating medical home access for all
children ensures we still reach non-CSHCN populations that would greatly benefit from
coordinated, family-centered care. We recommend that this performance measure include a
component that continues to allow us to gauge the extent to which CSHCN have access to a
medical home within the overall population of children.
Missing: Family Engagement
We suggest that a performance measure be added to the Child Health domain to address
promoting and/or facilitating family engagement in children’s health systems.
MCH programs are most successful when they engage the families impacted by the policies,
systems, and services they promote at all levels. Including families at the policy and planning
level and engaging parent leaders and parent leader organizations has proved to be a successful
and efficient strategy in CSHCN systems. Engaging families ensures that MCH services are
properly targeted and that resources are not unnecessarily wasted. Family Voices has already
begun to explore engagement of family leader organizations regarding non-CSHCN measures
within Title V. This measure is aligned with the Healthy People 2020, 10 Essential Public Health
Services; as well as the Maternal and Child Health Equity Blueprint Draft goal to strengthen
MCH systems of care (Goal 5, p. 16).
It is important to note that family engagement is a shared responsibility that also requires
partnerships with family leaders, family organizations including Family to Family Health
Information Centers and Family Voices State Affiliate Organizations, EI/education-focused
parent centers, parent to parent programs, parent advisory councils, Federation of Families for
Children’s Mental Health chapters, community-based organizations and immigrant organizations
that serve diverse families, etc.
Family leaders from diverse backgrounds and family-led organizations can play critical roles in
helping health institutions and professionals understand how to more effectively engage, support,
and partner with, diverse families, including but not limited to families of children with
disabilities and special health care needs, limited English proficiency/ English language learners,
of color, from lower socio-economic backgrounds, diverse religious backgrounds, etc. Family
leaders from diverse backgrounds and family-led organizations can also serve as “family cultural
brokers,” helping to strengthen connections between health organizations and the children and
families they serve.

4

Family and family organization engagement indicators must be developed and integrated into
existing data systems. Further, MCH programs must be encouraged to use data from family
organizations such as data from F2Fs, FV SAOs, FFCMH chapters, EI/education- focused parent
centers, and parent to parent programs, as well as to work with family organizations to develop,
disseminate, and analyze results of surveys, focus groups, and other mechanisms that are most
likely to garner diverse family feedback.
Children and Youth with Special Health Care Needs
Transition (CSHCN 3)
Under “Tier 4: What are the related outcomes?” we suggest adding an outcome measurement
that focuses on the number of adult/general family doctors who are trained on providing adult
health care services to people with disabilities. In addition, providers should be connecting, and
documenting connections of, families to transition resources such as those provided by the
Centers for Independent Living found at www.ncil.org.
Traditionally, physicians who have expertise in caring for persons with disabilities have
practiced primarily in pediatric medicine. One of the major barriers to transition to adult health
care for children and youth with special health care needs has been a lack of physician
knowledge about transition and an attitude that they are a distinctly separate population as
opposed to adults with the condition or characteristic of having a disability (The New Jersey
Action Blueprint for Transition to Adult Health Care, p. 13). We believe that this is an important
outcome to measure in ensuring that CSHCN are not only ready to transition to adult health
systems themselves, but that networks of informed and trained general physicians are ready to
serve them to maintain the presence of a medical home through adulthood.
Adolescent Health
Screening for Major Depressive Disorder (AH 3)
We suggest adding Healthy People 2020, MHMD 11.2 – “Increase the proportion of primary
care physician office visits where youth aged 12 to 18 years are screened for depression” to the
“Benchmark Data Sources” section of this performance measure.
One of the Tier 4 outcomes on this measure examines “% of adolescent well care visits that
include screening for MDD.” The Healthy People 2020 objective will provide relevant
benchmark data for this particular outcome measure. In addition to evidence-based models such
as Teen Screen, the issue of network adequacy must be addressed, including the use of
innovative models such as the NJ Children’s Primary Care Psychiatry Collaborative which,
along with programs in over 30 other states, addresses specialist shortages by utilizing child
psychiatrists in a consultative model with primary care.
Capacity Building
Technical Assistance (CB 2)
Under “Tier 2: To whom are you providing TA?” missing from the list are “program
participants/the public.” The “Significance” portion of this measure as well as the “Data
Collection Form for #CB 2” both indicate that the public are to be included in the technical
assistance data collection; it therefore should also be listed under Tier 2.

5

Core Measures
Quality Improvement (Core 2)
Under “Tier 2: QI Initiative,” we encourage the inclusion of a question that asks whether
grantees are engaging families/consumers in their quality improvement initiatives. Keeping in
mind the goal to align priorities with Title V, we believe it is important to ensure that grantees
implementing quality improvement strategies engage program participants, diverse families, and
family-led organizations in their process(es). Family/ consumer and family-led organization
engagement in quality improvement activities and strategies is consistent with, and required by,
the Title V Maternal and Child Health Services Block Grant to the States Program Guidance.
Health Equity (Core 3)
Under “Tier 2: Please select within which of the following domains your program addresses
health equity” there is an exhaustive list of domains. We believe that this list should be edited to
include the domains of “Religion,” “Age,” “Mental Health Status;” and “Other” to create a more
comprehensive and open-ended list of domains.
Within the Maternal and Child Health Equity Blueprint Draft (p. 4), “health disparities” has been
defined to mean those groups who experience “greater obstacles to health based on their racial or
ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or
physical disability; sexual orientation or gender identity; geographic location; or other
characteristics historically linked to discrimination or exclusion.” With this definition in mind,
we believe that a performance measure related to health equity should include the
aforementioned missing domains, as well as provide an open-ended list for grantees to identify
domains not explicitly stated that they may be targeting in their programs based on their own
data and population characteristics as well as family/consumer input. Here again network
inadequacies must be addressed as these lead to health disparities and poor outcomes.
Program Specific Measures
MCH Workforce Development
Family/Youth/Community Engagement in MCH Training Programs (Training 1)
We strongly support the inclusion of this measure within the MCH Workforce Development
program. We believe that family engagement and the creation of parent/youth/community
leaders ultimately leads to better overall health outcomes for MCH populations and gives
grantees and MCH a more complete understanding of the population they serve—increasing
efficiency and effectiveness of MCH programs. This measure should specify that relevant
professional development opportunities should be provided to diverse family leaders and family
organizations who are a key component of the MCH workforce.
Cultural Competence in MCH Training Programs (Training 2)
We strongly support the inclusion of this measure within the MCH Workforce Development
program. Building a culturally and linguistically competent workforce within MCH is crucial to
closing the health equity gap and reducing health disparities in MCH populations. We
recommend that this measure clarify that culture is not just race, ethnicity, or language but also

6

involves religion, geography, socio-economic status, etc., as per the definition from the National
Center for Cultural Competence:
“Culture is an integrated pattern of human behavior which includes but is not limited to thought, communication, languages, beliefs, values, practices, customs, courtesies, rituals,
manners of interacting, roles, relationships, and expected behaviors of a racial, ethnic, religious,
social or political group; includes gender, sexual orientation, etc.”
MCH Pipeline Program (Training 5)
We generally support the inclusion of this measure in MCH Workforce Development. We
believe it is essential that MCH have a trained workforce that mirrors its targeted populations—
culturally, ethnically, linguistically—in providing quality healthcare to vulnerable and
underserved communities.
However, we feel that the definition used to identify “vulnerable populations” is too limiting
here. The performance measure gives a limited list by clarifying “vulnerable populations” to
mean “i.e. Immigrant Populations Tribal Populations, Migrant Populations, Uninsured
Populations, Individuals Who Have Experienced Family Violence, Homeless, Foster Care,
HIV/AIDS, etc.” We believe that the use of a broader definition of “vulnerable populations”—
such as that given by the CDC—would ensure that populations such as CSHCN and LGBTQ
youth would be included in health equity measures. The CDC’s definition includes
“race/ethnicity, socio-economic status, geography, gender, age, disability status, risk status
related to sex and gender, and among other populations identified as at-risk for health
disparities” which includes populations such as “cancer survivors, immigrants and refugees,
incarcerated men & women, persons who use drugs, pregnant women, veterans, etc.” (Centers
for Disease and Control Prevention, Minority Health, Other At Risk Populations, February
2014). We feel it is important to have an inclusive definition of “vulnerable populations” in order
to ensure gaps in equity are truly met.
Diverse Adolescent Involvement (Training 10)
We strongly support the inclusion of this measure within the MCH Workforce Development
program. We believe that consumers of health care services – children and families – should play
a critical role in informing policy and driving program activities that are relevant to the services
they consume. Involvement of diverse families and adolescents in the training of future leaders
in adolescent health is paramount to ensuring a culturally competent workforce able to serve
MCH populations.
Other comments
Please note that the data collection form for F2F 1 does not include the race/ethnicity category of
Native American/American Indian or Alaskan Native, and it should. These groups should not be
lumped under “Other.”
Thank you for the opportunity to comment on the information collection request on the Maternal
and Child Health Bureau Performance Measures for Discretionary Grants.
Submitted on behalf of:

7

Family Voices of New Hampshire (F2F & FV SAO)
Family Voices of NJ (F2F & FV SAO)
Family Voices of Tennessee (F2F & FV SAO)
National Center for Parent Leadership, Advocacy, and Community Empowerment
National Federation of Families for Children’s Mental Health (National)
Parent to Parent USA (National)
Parents’ Place of Maryland (F2F, FV SAO, PTI)
Parents Reaching Out (New Mexico) (F2F, FV SAO, PTI, P2P)
Statewide Parent Advocacy Network (FFCMH, F2F, FV SAO, PTI, P2P)
Utah Family Voices (F2F, FV SAO)
*FFCMH = Federation of Families for Children’s Mental Health
*F2F = Family to Family Health Information Center
*FV SAO = Family Voices State Affiliate Organization
*PTI = Parent Training and Information Center
*P2P = Parent to Parent USA Affiliate

8

January 4, 2015

HRSA Information Collection Clearance Officer
Room 10-29
Parklawn Building
5600 Fishers Lane
Rockville, MD. 20857
RE: Information Collection Request Title: Maternal and Child Health Bureau (MCHB) Performance
Measures for Discretionary Grants
To whom it may concern:
We appreciate the opportunity to provide comments on MCHB’s proposed performance measures
related to transition. As MCHB’s national resource center on transition (Got Transition/Center for
Health Care Transition Improvement), we work with a broad range of partners to:
1. Expand the use of the evidence-informed Six Core Elements of Health Care Transition in
pediatric, family medicine, and internal medicine practices using quality improvement
methodologies.
2. Partner with health professional training programs to improve knowledge and competencies
in providing evidence-informed transition supports to youth, young adults, and families.
3. Develop youth, young adult, and parent leadership in advocating for needed transition
supports.
4. Promote health system measurement, performance, and payment policies aligned with the
Six Core Elements of Health Care Transition.
5. Serve as a clearinghouse for current transition information, tools, and resources.
Our comments on CSHCN Goal 3 Transition pertain to the goal statement, its measurement, definition,
significance, and activity data collection form. Overall, we recommend that the reporting requirements
consider transition for all youth, as MCHB’s performance measure calls for. We also recommend that
you consider adding a question before the definition about whether or not the agency responding
provides clinical care or not because much of the information requested in two of the three outcomes
will not work for those not providing direct services. Below are our suggested alternatives for each of
these sections.
Goal: To ensure supportive programming for transition to adult health care for youth with and without
special needs. Comment: Although MCHB’s transition measure falls under the MCH population domain
of children with special health care needs, the actual goal should be consistent with MCHB’s
performance measure and expanded to include youth with and without special health care needs.
Measure: The percent of MCHB funded projects promoting and/or facilitating transition to adult health
care for youth with and without special needs.
Definition:
Tier 1. Are you addressing transition from pediatric to adult health care? Select all that apply

Yes, we are addressing transition for youth with special health care needs
Yes, we are addressing transition for youth without special needs
No
New Question: Does your MCHB grant-funded program provide clinical care?
Yes
No
Tier 2. Through what activities are you promoting or facilitating transition to adult health care?
Health Professional Education and Training
Parent/Youth/Young Adult Education and Training
Quality Improvement Initiatives
Direct Involvement with Adult Health Care Providers/Systems
Payment Strategies
Research and Evaluation
Transition Readiness Assessment/Self-Care Assessment
Care Coordination, incorporating Transition
Health IT
Medical Home Initiatives
Adolescent Well-Care Initiatives
Health Insurance Coverage
Other (please specify)
Tier 3. How many (systems, providers, patients, and families) are reached through these
transition-related activities? Comment: We recommend simplifying this table to count only
total numbers and not to break out by audience.
Tier 4. What are the related transition outcomes? Comment: All of these outcomes are new.
% of grantees promoting an evidence-informed framework (eg, Six Core
Elements of Health Care Transition) and clinical recommendations
(AAP/AAFP/ACP Supporting the Health Care Transition from Adolescence to
Adulthood in the Medical Home) for transition from pediatric to adult health
care.
o Numerator: Number of Grantees promoting an evidence-informed
framework
o Denominator: Total Number of grantees reporting transition
performance measure
% of grantees involving both pediatric and adult providers/systems in transition
efforts
o Numerator: Number of pediatric and adult dyads involved in grantees’
transition efforts
o Denominator: Total number of transition practices sponsored by
grantee
% of grantees initiating or encouraging transition planning early in adolescence
o Numerator: Number of Grantees promoting transition planning early in
adolescence

Denominator: Total number of grantees reporting transition
performance measure
% of grantees linking transition efforts with medical home initiatives
o Numerator: Number of Grantees promoting transition as part of routine
medical home care
o Denominator: Total number of grantees reporting transition
performance measure
% of grantees linking transition efforts with adolescent preventive care efforts
o Numerator: Number of grantees promoting transition as part of routine
adolescent preventive care
o Denominator: Total number of grantees reporting transition
performance measure
o

Again, we appreciate the opportunity to comment on MCHB’s proposed reporting requirements.
Please do not hesitate to contact us if you have questions.
Sincerely,
Peggy McManus, MHS
Patience White, MD, MA
Dan Beck, MA
Nichole Goble, BA

Attn: HRSA Information Collection Clearance Officer
5600 Fishers Lane, Parklawn Building, Rm 10-29
Rockville, MD 20857
From: Nora Wells, Executive Director, Family Voices (781-879-6209)
Re: FR DOC #: 2015-28264
Submitted Electronically through [email protected]
Information Collection Request: Maternal and Child Health Bureau Performance Measures for
Discretionary Grants
Thank you for the opportunity to comment on the Maternal and Child Health Bureau Performance
Measures for Discretionary Grants. We recognize the large undertaking and critical purpose that the
revisions to the HRSA MCH Discretionary Grant Performance Measures represent and greatly appreciate
this opportunity for public comment.
Family Voices is a national, family-led organization that promotes quality health care for all children and
youth, especially those with special health care needs. Family Voices represents and works with
multiple state and national family leaders and family-led organizations in every state and the District of
Columbia. Family Voices has been the MCHB grantee organization for the National Center for Family
Professional Partnerships (NCFPP) for the past 9 years. As the NCFPP we work very closely with the 51
MCHB funded Family-to-Family Health Information Center (F2F HICs) grantees, and this work has
included extensive technical assistance around reporting data for Performance Measure 70, specific to
F2F HICs.
Our comments are based on this extensive work with the network of MCHB funded Family to Family
Health Information Centers as well as work with other diverse family leaders across the country, our
experiences working with a wide range of MCHB national and state level partners, including State Title V
programs, and as noted above, our experience as the National Center for Family Professional
Partnerships MCHB grantee.

The following comments focus on overall aspects of the proposed revisions, requirements to measure
performance around family and consumer engagement, as well as the necessity and utility of the
proposed information collection for the proper performance of MCHB’s function and ways to enhance
the quality, utility and clarity of the information to be collected. We support the overall framework for
the updated DGIS Performance Measures and the alignment with already existing Title V Performance
Measures in order to create a more cohesive picture of MCHB’s overall purpose and impact. We
strongly support the comments submitted by the Statewide Parents Network of New Jersey (SPAN) and
other Family Voices’ State Affiliate Organizations and F2F-HICs and in particular the excellent ideas
Our Mission: Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public
and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

www.familyvoices.org ♥ PO Box 37188 ♥ Albuquerque, NM 87176 ♥ (p) 888.835.5669 ♥ (f) 505.872.4780

outlined in those comments to ensure that measurement includes a reporting on the progress of MCHB
grantees in meeting the specific needs of the most underserved of the intended MCHB beneficiaries.
2. Family Voices welcomes and strongly supports MCHB’s acknowledgement of the critical role of
family engagement in policymaking activities and the statement that “in accordance with this
philosophy, MCHB is facilitating such partnerships at the local, state and national levels”.
However, we believe that family/consumer engagement should be required and measured across all
MCHB funded programs, beyond children and youth with special health care needs. Family Voices
believes that all consumers of health care services – women, youth, and families of all children– need to
play a critical role in informing policy and driving program activities that are relevant to the services they
consume. While it appears that the revised Performance Measures for Discretionary Grants require that
some programs (e.g. workforce development) are required to measure this involvement, it is unclear
whether all programs will be required to measure their partnerships with consumers and families.
Partnerships with family – led organizations, particularly engagement with fellow MCHB funded F2F
HICs should be measured by all grantees. Furthermore, every grantee as part of measurement of
authentic family engagement, should be required to gather feedback directly from the family
members/consumers with whom they are engaged, including information on the diversity of
populations they represent, and this feedback should relate to the value/impact of their engagement in
the development, implementation and evaluation of the program.
Family Voices recommends that MCHB review all the domain and program specific measures and
detail sheets to assure that there is universal application of measurement of the critical role of family
and consumer engagement. We recommend that a performance measure be added to all domains
(e.g. Child, Women, Adolescent health) to address promoting and facilitating family/consumer
engagement. We recommend that grantees be required to gather feedback from their engaged
families/consumers as part of their measurement protocol and that this feedback represent and be
gathered from the full diversity of populations served, including particularly those from underserved
groups, and family-led organizations
2. One of the most important aspects of measurement is consistency in data reporting among all
grantees. Without definitions and a universal process to collect data, it is difficult to aggregate data and
compare results within and across programs. For example, on the performance measure for CSHCN,
how is family versus CSHCN leaders defined? Is “CSHCN leaders” meant to be Title V staff, other
professionals, or children themselves? The wording of the measure on the percent of programs
promoting and/ or facilitating family engagement among children and youth with special health care
needs is confusing. Is it measurement of the percent of programs promoting and/or facilitating family
engagement among children and youth with special health care needs, or does it refer to measurement

Our Mission: Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public
and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

www.familyvoices.org ♥ PO Box 37188 ♥ Albuquerque, NM 87176 ♥ (p) 888.835.5669 ♥ (f) 505.872.4780

of the percent of programs promoting and/or facilitating family engagement within the programs that
serve CSHCN?
Family Voices recommends that MCHB provide guidance which includes definitions and specific
suggestions for tools and processes to collect the data that is intended to inform the measures. Family
Voices also recommends that groups of grantees and Project Officers meet periodically to discuss
protocols, processes and strategies for reporting these performance measures.
3. Family Voices recognizes the critical importance of data collection to document the outcomes of MCH
investments. However, based on our experiences working with the F2F HIC grantees, the burden can
vary tremendously, and may be particularly burdensome for grantees with limited staff and resources.
For the data to be valuable, time must be dedicated to understanding the measure, developing
appropriate data collection elements, and allocating staff time to collect and report the data. Based on
our experience in helping F2F HICs to report data for current Performance Measure 70, the estimated
time burden of 41 hours per grantee underestimates the amount of time some F2Fs need to collect,
analyze and report the data required. See calculations below under # 6.
Family Voices recommends that MCHB provide resources for training for grantees, and consider the
resources needed by grantees for data collection based on the specific program requirements in future
grant awards.
4. As acknowledged by MCHB, access to and use of medical home is key to improving outcomes for all
MCHB populations, not just children and youth with special health care needs. However, it appears that
this performance measure is focused solely on children with special health care needs, and is not
required by other programs serving the full range of MCH populations.
Family Voices recommends that a performance measure be added to the Women, Child and
Adolescent domains to address promoting and /or facilitating medical home access.
5. For the Life Course Performance Measure on Oral Health, the population domains include children,
but not specifically children and youth with special health care. Access to oral health is a particular
challenge for children/youth with special health care needs and it would be helpful to collect data on
efforts to improve access to oral health for this subpopulation of children. It should be noted that the
other life course performance measures have CSHCN as a separate population domain.

Our Mission: Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public
and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

www.familyvoices.org ♥ PO Box 37188 ♥ Albuquerque, NM 87176 ♥ (p) 888.835.5669 ♥ (f) 505.872.4780

Family Voices recommends that the life course performance measure on oral health be revised to have
a specific domain for children and youth with special health care needs. This will align this
performance measure with the other life course performance measures
6. The following comments are specific to the proposed F2F 1 Performance Measure: The percent of
families with Children with Special Health Care Needs that have been provided information, education
and/or training by Family-to-Family Health Information Centers (F2F)
Item #A1a: Our organization provided one-on-one health care information (including
referrals)/education/training/peer support to families with CSHCN to assist them in accessing
information and services. Total number of families served/trained:___________
Comment: This score represents a ratio calculated from the total number of families that have been
provided information, education, and/or training from an F2F divided by the estimated number of
families with CSHCN in the State, calculated from the National Survey. This ratio is complicated by the
following:
• The national survey provides an estimate of the number of families with CSHCN in the state
based on calls made to individual families which is then extrapolated to arrive at the estimate of
total families in the state with CSHCN. When the F2F is calculating the # of families served, it is
not always possible for an F2F to identify the individual family who is being assisted or trained.
For example, many F2Fs provide trainings for which no identifying information is provided about
the participant. Similarly, it is not always possible to obtain identifying information, including
racial and ethnic data, on individuals served one-on-one at community events. In addition,
many F2Fs provide assistance via Facebook and it is not feasible to obtain identifying
information in these circumstances. If identifying information is not available then the
participant data cannot be merged and de-duplicated with data on individuals that have been
served and identified by the F2F, resulting in inaccurate numbers.
Item #A1b: Race
Comment:
• It appears that American Indian/Alaskan Native (AIAN) is missing from the list of Race
Categories.
• Some families identify in more than one race category. Is it feasible, then, to have the total # of
families served by race be greater than the total # of families served (A1a)?

Our Mission: Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public
and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

www.familyvoices.org ♥ PO Box 37188 ♥ Albuquerque, NM 87176 ♥ (p) 888.835.5669 ♥ (f) 505.872.4780

Item #A1d: Instances of service by type
Comment:
•

Should training that is provided online be included here, as It may not be interpreted as a oneon-one service?

•

What types or examples of meetings/conferences should be included here? If an F2F staff
participates in a meeting but does not contribute, is the F2F providing one-on-one service?
Should conferences be broken down into individual workshops (participants may differ from
workshop to workshop)?

Item #2a: Total number of professionals/providers served/trained
Comment:
• Are counts of professionals/providers also based on one-on-one service?
Item #3a: Print/media information and resource dissemination
Comment:
• Are all information/resources counted or just those authored by the F2F?
• It is assumed that hardcopy disseminations represent a total # of materials disseminated. For
example, if the F2F disseminated 50 brochures and 100 care notebooks at an event, then 150
would be reported here. What is counted for electronic newsletter, listserv, and social media
platforms? For example if the F2F announces a new resource to their listserv of 500 members,
is the count of 1 or 500 reported here?
• Should web downloads of materials (PDF, doc, ppt) be also added to this list?
Item #4a: Types of State agencies
Comment:
• Why is this measure a count of types rather than a total of agencies?
• Or is this measure intended to include a count of types as well as a total of all agencies?
Comments re the estimate of time needed for data tracking of F2F 1 Performance Measure
Multiple data processing steps are required to meet this measure. See footnote below about data
entry.*
• The range of 1 -1 duplicated cases served by F2Fs reported in F 2015 ranges from 166 –
73,401. The median is 1503. Calculated at 2.5 minutes per case, the number of hours of
data entry time needed based on the median is 62 hours.
• Data entry time required to enter trainings calculated at 10 minutes per training
including participants based on the average # of trainings recorded by an F2F in FY2015
(216), is 36 hours.

Our Mission: Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public
and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

www.familyvoices.org ♥ PO Box 37188 ♥ Albuquerque, NM 87176 ♥ (p) 888.835.5669 ♥ (f) 505.872.4780

•

Time required to aggregate this data and submit to the NCFPP is estimated at 2-8 hours
per F2F - 8 hours
• Time required to pull, clean and aggregate material disseminations by type, partnering
agencies by type, partner agreements, and staff counts is estimated at 5 hours per F2F 5 hours.
• Total Estimated Data Processing Time per F2F based on current PM 70: 111 hours
annually
* From an F2F comment submitted with their 2014-2015 data report to the NCFPP: “Even with the
customized Salesforce data system, data collection and reporting remains extremely time consuming.
There are several steps required to enter all of the information for each encounter with a family. New
cases can take up to five minutes to enter all information and details.

Our Mission: Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public
and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

www.familyvoices.org ♥ PO Box 37188 ♥ Albuquerque, NM 87176 ♥ (p) 888.835.5669 ♥ (f) 505.872.4780

Title: Comments to HRSA Maternal and Child Health Bureau performance measures for grant programs
(The performance measures that we responded to are attached in the email)
State: New York State
Date: January 5, 2016
Summary: Below, we describe some of the data sources that New York State would use if asked to
report on these performance measures. The measures most difficult to report on are those that include
promotion and outreach (Tier 2 and Tier 3). Currently, there is not a statewide system that tracks
promotion and outreach in these areas. We do see the benefit of this data collection but struggle with
how to collect statewide.
Additionally, when talking with our MIECHV partners, we were alerted that some of the outcome
measures overlap with the new proposed MIECHV benchmarks. Example: there is some overlap
between the Tier 4 outcome measures and some of the new MIECHV benchmarks HRSA proposed (yet
to be finalized). This would allow New York State to provide aggregate data about MIECHV clients for
those measures. However, there could be a problem if the reporting periods are different. MIECHV
reports on the federal fiscal year (10/1-9/30). If these measures report on a different reporting period it
would require two separate analyses and that would be very burdensome.
Comments on specific measures:
PIH 1
Safe Sleep
Perinatal Infant Health
Home visiting (HV) programs provide information about safe sleep and connect clients to resources to
create a safe sleep environment. Additionally, licensed and regulated providers must receive training on
safe sleep, as per requirements of the New York State Office of Children and Family Services (OCFS). To
collect Tiers 2 and 3 would require a new data collection method—not currently collected. There is
however a group of Infant Toddler Specialists in New York State that could pull some of this technical
assistance data on safe sleep from their own data collection system, but it is limited. The first measure in
Tier 4 is part of a composite measure that’s been proposed for the new MIECHV benchmarks so New
York State would have that information for MIECHV-funded sites. The second measure in Tier 4 could be
collected by reviewing past violations of a program.
PIH 2
Breastfeeding
Perinatal Infant Health
HV programs promote and facilitate breastfeeding through prenatal education and postpartum support.
Tiers 2 and 3 are not currently collected from our MIECHV providers. Again, there is a group of Infant
Toddler Specialists in New York State that could provide some data on technical assistance (re:
breastfeeding) but it is limited. Both Tier 4 measures are collected by Nurse Family Partnership and
Heathy Families New York. The second measure is the same as the proposed MIECHV benchmark
regarding breastfeeding.
Page 1 of 4

Breastfeeding data is also collected in all CACFP programs, and program violations are also a good
indicator. There are also Referral Specialists of the Child Care Resource & Referral agencies in New York
State that would have some data on parents asking for breastfeeding programs.
Lastly, a new training is being developed for Child Care Health Consultants that will address the
importance of breastfeeding (expected date: February 2016) and therefore outreach data will be
collected.
PIH 3
Newborn Screening
Perinatal Infant Health
Newborn screening program is not explicitly part of the HV curricula, so our MIECHV partners would not
have this data, nor would our other available sources. This would be difficult to collect, although
important for New York State.
CH 1
Well-Child Visit
Child Health
HV programs promote the importance of well-child visits and will assist clients to find providers or make
appointments if necessary. Tiers 2 and 3 are not currently collected. Both Tier 4 measures can be
reported using MIECHV data, but will be based on parental self-report. MIECHV benchmark is different,
measuring the children receiving the recommended number of well-child visits based on age.
CH 2
Quality of Well-Child Visit
Child Health
This would be difficult to collect, although important.
CH 3
Developmental Screening
Child Health
Home visitors administer developmental screenings with clients and their children and will make
referrals when necessary. Tiers 2 and 3 not currently collected. Tier 4 could be reported for MIECHV
index children, but not up to 71 months because Nurse Family Partnership ends at 24 months and
Healthy Families New York ends at 60 months of age. The measure is similar to the MIECHV benchmark,
which looks at 1 screening by 9 months, 2 by 18 months and 3 by 30 months.
Additionally, the Child Care Resource & Referral agencies are now surveying providers who do
developmental screening. The Early Intervention group might also have this information and other
individual child care programs. The CCDBG will make this more prominent and programs will have to do
this.
CH 4
Injury Prevention
Child Health
Page 2 of 4

HV programs provide information about child safety and injury prevention at multiple times during
program involvement. Tiers 2 and 3 not collected, but could probably check which child safety domains
HV programs address. The Child Development Associate Credential (CDA) also has modules on injury
prevention so outreach data could be pulled from here. The first measure under Tier 4 is collected by HV
programs but based on parental self-report. As mentioned above, the HV programs do not serve
children to age 9. The second measure under Tier 4 is for children outside the age range served by
MIECHV HV programs.
Additionally, child care programs do not focus specifically on this. Information could be collected by
violations detected by the Office of Children and Family Services and injury rates. Supervision
requirements could also be looked at.
Lastly, a new training is being developed for Child Care Health Consultants that will address the injury
prevention (expected date: February 2016). Outreach data could be analyzed.
CB 1
State capacity for advancing the health….
Capacity Building
This is somewhat of a confusing section.
CB 2
Technical Assistance
Capacity Building
Some of this could be covered by the Office of Children and Family Services and CACFP training
requirements, but a challenge to collect.
CB 3
Impact Measurement
Capacity Building
Possible data sources would include:
• Early Care & Learning Council – Child Care Resource & Referral (CCR&Rs) statewide coordinating
agency (CCR&Rs are required to do surveying)
• Infant Toddler Specialists
• Department of Education - Regional Early Childhood Protection Centers
• UPK and early UPK
• Headstart
This would be difficult to collect because there are different systems across the state.
CB 4
Sustainability
Capacity Building
New training developed for Child Care Health (expected date: February 2016). Training modules and
updating of website, supported by ECCS funds, will be available and ongoing.

Page 3 of 4

CB 5
Scientific Publications
Capacity Building
Not much here. This really isn’t a focus of HV and the ECCS grant.
CB 6
Products
Capacity Building
New training developed for Child Care Health (expected date: February 2016). Training modules and
updating of website, supported by ECCS funds, will be available and ongoing. Blogs have also been
written for Child Care Health Consultants. Many state agencies/entities, such as Docs for Tots, the Early
Childhood Advisory Council, Early Care & Learning Council, NYS Zero-To-Three all do publications. This
would not be difficult to track, but time-consuming.

Page 4 of 4

Town Hall #1
MCHB Staff
12/10/15

Feedback:
• Jennifer PPA: Process that PO will use to assign the measures to their grants (during the FOA?)
o When they are developing the FOA, that is when they’ll select the measures they plan to
use, similar to what is done now.
• Cherri’s Question: Will grantees be able to add options under tier 2? For example in the
perenatal care example, for MIECHV, would they be able to add ‘home visiting services’? or
instead, would they need to try to fit HV into the outreach or other category provided? i.e.
who/how do the options within each of the tiers get created?
o MCH would leave the option for the grantees to add something if it’s not already
provided.
• Claudia: What project measures will grantees starting june-sept 2016 use for reporting current
or new PMs?
o MCH will probably – for grantees we will have them (we’ll have to work on a transition
plan) have the new measures, or at least provide the link to the measure package. If we
have OMB approval, then MCH will assign the measure, but it won’t be in DGIS quite
yet. But we should plan on transitioning off the old measures shortly.
• Cherri:
o Population domains, asking the grantees to report in different programs/initiatives, do
they have to stick within that (CSHN –family engagement strategy) this may also be
available in adolescent health, etc. is there flexibility
 The answer is yes.
• Erin: Can grantees make recommendations now through the town halls and formal comment to
add additional options in the tier 2 and 3 lists?
o Yes, now is the time to make recommendations!

Townhall #3
Led by Michael and Chris
12/17/15

•

Is there a reason why the new measures are requiring so much detail? It seems like this level of
detail belongs in the narrative.
o

•

When implemented
o

•

There reason there is more detail, we wanted to create a data system where we could
collate the data quickly to be able to tell MCH’s story more easy. We get questions from
Congress, and we need to be able to summarize data and responses more quickly.

around October 1, 20116

Will DGIS be a “new” reporting requirement/system for Title V state grantees, in addition to the
reporting provided via TVIS?
o

TVIS is dedicated to the state block grant. If you as a state have a discretionary grant,
you’ll be using DGIS to report on that grant.

Town Hall #2
Led by Michael Kogan
12/16/15

Feedback:
• Debbie Mays – is it possible to provide some additional definition (ex. Table 1) Columns that
differentiate local partners from national partners…
o Submit that for comments, then they will take that into consideration for the official
OMB package.

Town Hall #1
Led by Reem
12/10/15

Feedback:
• Linda Potter: Do you have a rough estimate of when you think that OMB will provide approval?
o Usually 2-3 months, MCH expects them to go into effect October 2016
• Deborah Brown: Can you provide us a link to the Federal Register where the DGIS measures are
published?
o Go to MCHB website – right on the homepage.
• Jean Davis: For the program specific measures is there an expectation about how many would
be assigned.
o Haven’t mapped it out that far, want to make sure there is some flexibility and to figure
out how it’s most effect. The biggest effort is on making the utility work better. They
haven’t set a firm number.

December 28, 2015

Michael C. Lu, MD, MS, MPH
Associate Director
U.S. Department of Health and Human Services
Heath Resources and Services Administration
Maternal and Child Health Bureau
5600 Fishers Lane
Rockville, MD 20857
Dear Dr. Lu,

On behalf of the University of Colorado Denver School of Medicine and the Colorado
Emergency Medical Services Program we appreciate the opportunity to comment on
the Maternal and Child Health Bureau Performance Measures for Discretionary Grants
(OMB No. 0915±0298—Revision) particularly those measures listed for the Emergency
Medical Services for Children Program in the Division of Child, Adolescent and Family
Health. We are generally in agreement with the measures listed, and excited at the
progress they will enable within our state moving forward. We are concerned, however
with the narrow construction of performance measure EMSC 03 regarding the use of
pediatric equipment. Overall, while we find the conceptual justification for this measure
to be very reasonable, we are concerned that a significant amount of effort will be
expended to acquire incomplete and ineffectual information based on how this measure is
currently constructed. As such, we would encourage changes to this performance
measure as currently drafted in order to provide a more comprehensive and useful
measurement of the systems in place to ensure EMS provider competency in pediatric
care for the following reasons:
First and foremost, we anticipate this measure will be assessed through the electronic
surveying of EMS services within our state. While this responsibility will not fall directly
on our state EMS for Children program, we anticipate, based on past experience, that we
will expend significant effort and goodwill to encourage a high response rate amongst our
stakeholders. As such, we believe it is critical that we ask for comprehensive and
actionable information in exchange.
Furthermore, the Miller framework for the assessment of Clinical Skills / Competence /
Performance referenced in the performance measure proposal lists 4 areas related to the
development of competence including knowledge, competence, performance and action1.
From the provider perspective this means the provider has the requisite knowledge base,
knows how to apply it, demonstrates how to apply it, and integrates that knowledge into
clinical practice. As currently proposed, this measure will only measure a narrow sliver
of applied knowledge regarding isolated equipment use. The measure is further
concerning as it describes the measurement of “the correct use of pediatric specific
equipment” which currently has no definition regarding what the equipment is, or should
be. While the use of appropriately sized medical equipment is clearly an element of
providing pediatric care, it is by no means the entirety of safe and effective care.

1

The performance measure justification further references the work of Lammers et. al and
Su et. al. While the actual Lammers et. al work referenced is unclear, his work to date
reflects the identification of errors in pediatric care by EMS providers in simulated
environments2,3. Lammers suggests a variety of remedies for the errors found including
targeted training, the use of quick reference tools, equipment inspection and testing of
competency with medication dosing. Equipment issues, when referenced, often relate to
generalized care equipment such as oxygen, airway adjuncts and glucometers used in
both adult and pediatric patients3. None of these additional factors are considered in this
performance measure. The work of Su and colleagues relates to retained knowledge after
completion of pediatric resuscitation coursework with no specific reference to
equipment4. Furthermore, the use of simulation to maintain and improve competency is
referenced as an area of great promise regarding the continued competency of EMS
providers by the IOM as well as other researchers5-7. Neither required coursework nor the
use of simulation to validate competency at the service level is identified as part of this
performance measure.
Another consideration regarding EMS provider competency is the ongoing availability
and promotion of pediatric resuscitation and emergency care training such as the
Pediatric Advanced Life Support (PALS) program, the Pediatric Education for
Prehospital Providers (PEPP) course and the Emergency Pediatric Care (EPC) program
which are in widespread use nationwide and often heavily promoted or subsidized by
state EMS for Children programs. Despite their ongoing place in EMSC, the overall
usage rates of these programs, is unknown and has never been measured by the EMS for
Children program despite the fact it is fundamental to Miller’s framework.
Considering all of these factors and the variety of issues surrounding actual EMS
provider competence, the proposed performance measure may be insufficient and will not
likely afford the MCHB with adequate information to evaluate EMS provider
competency assurance within EMS organizations, or the journey towards it. The
proposed measurement as currently crafted will create a burden on EMS agencies in its
collection but may fail to provide effective guidance to enable improvement. We would
therefore suggest an alternative or modified performance measure, designed to more
comprehensively evaluate the mechanisms in place to assure provider competency in
pediatric care. Examples of more comprehensive measurement could include:
•
•
•
•
•
•
•

Percentage of providers with supplemental pediatric education (i.e. PALS, PEPP
and EPC),
Existence of quality improvement metrics based on pediatric care protocols,
Amount of agency level training specific to pediatric equipment, drug dosing and
care protocols,
Regularity of inspection of pediatric equipment,
Availability of pediatric reference tools,
Availability and use of simulation training in pediatric care and,
Regularity of competency evaluation utilizing pediatric case scenarios.

2

It should be further noted that the measurement of these additional areas to a high degree
of specificity will likely require no more than 10 – 20 survey questions, significantly less
than the amount of information solicited from EMS organizations under previous
performance measures. In contrast to the proposed measure, information on these
expanded elements will provide state partnership grantees and the MCHB with more
detailed information on what competency assurance elements are in place on an agency
by agency basis, and where improvement efforts can be best targeted. Thank you for the
opportunity to comment and please do not hesitate to contact our state partnership
program manager, Sean Caffrey at [email protected] or 303-724-2565 if you
have any additional questions regarding these comments.
Sincerely.
Sean M. Caffrey, MBA, CEMSO, NRP
Kathleen M. Adelgais, MD, MPH
References

1.

Miller GE. The assessment of clinical skills/competence/performance. Acad.
Med. 1990;65(9):S63-67.

3.

Lammers R, Byrwa M, Fales W. Root causes of errors in a simulated
prehospital pediatric emergency. Acad. Emerg. Med. 2012;19(1):37-47.

2.

4.

5.
6.
7.

Lammers RL, Byrwa MJ, Fales WD, Hale RA. Simulation-based assessment of
paramedic pediatric resuscitation skills. Prehosp. Emerg. Care.
2009;13(3):345-356.

Su E, Schmidt TA, Mann NC, Zechnich AD. A randomized controlled trial to
assess decay in acquired knowledge among paramedics completing a
pediatric resuscitation course. Acad. Emerg. Med. 2000;7(7):779-786.
Institute of Medicine. Emergency care for children: growing pains.
Washington, DC: National Academies Press; 2006:198-199.

Ngo TL, Belli K, Shah MI. EMSC program manager survey on education of
prehospital providers. Prehosp. Emerg. Care. 2014;18(3):424-428.
Zaveri PP, Agrawal D. Pediatric education and training of prehospital
providers: a critical analysis. Clinical Pediatric Emergency Medicine.
2006;7(2):114-120.

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