Investigation Reporting and Evaluation

National HIV Surveillance System (NHSS)

Attachment 4d.
Data to Care Reporting Guidance for PS18-1802 Recipients

Data-to-Care Reporting Guidance
for PS18-1802 Recipients
January, 2019

Centers for Disease Control and Prevention
Division of HIV/AIDS Prevention
Data to Care Evaluation Workgroup
January, 2019

Data-to-Care Reporting Guidance for PS18-1802 Recipients
Table of Contents
Summary ...................................................................................................................................................................2
Main Steps in Data-to-Care Not-in-Care Programs .............................................................................................3
Data-to-Care Not-in-Care Logic Model .................................................................................................................4
Evaluation Questions...............................................................................................................................................5
Indicators ..................................................................................................................................................................5
Table 1. Key PS18-1802 data-to-care not-in-care outcome indicators ..................................................................5

Variables Needed to Assess Key Outcome Indicators ........................................................................................6
Table 2. PS18-1802 data-to-care not-in-care data elements and definitions ........................................................6

Methods for Calculating Key Outcome Indicators ..............................................................................................9
Table 3. PS18-1802 data-to-care not-in-care indicators, numerators & denominators, and methods of
calculation ..............................................................................................................................................................9

Collecting Data for Data-to-Care Not-in-Care Variables.................................................................................. 10
Example of a data collection tool ........................................................................................................................ 11

Reporting Data for Data-to-Care Not-in-Care Variables to CDC via eHARS .................................................. 12
Table 4. PS18-1802 data-to-care not-in-care data: availability and reporting timeline ..................................... 12

Data Management and Quality Assurance of Data-to-Care Not-in-Care Data ............................................ 13
Data Security and Confidentiality ....................................................................................................................... 13
Appendix ................................................................................................................................................................ 14
Figure 1. Data-to-Care Health Department Model: Key Steps ............................................................................ 15
Figure 2. Data-to-Care Collaborative Model: Key Steps ...................................................................................... 16

1

Data-to-Care Reporting Guidance for PS18-1802 Recipients
Summary
The Centers for Disease Control and Prevention (CDC) needs accurate reporting of three key Data-to-Care (D2C)
outcome indicators to monitor and evaluate outcomes for PS18-1802 programs, ensure accountability for funds
appropriated by the U.S. Congress for HIV prevention, and inform the Division of HIV/AIDS Prevention’s (DHAP)
planning. These three D2C indicators are included in the PS18-1802 Evaluation and Performance Measurement
Plan under Strategy 4 and are also described in this document. To monitor and evaluate D2C outcomes among
those Not-In-Care (NIC), CDC has developed a logic model that includes the six main operational steps of D2C
NIC investigations and added 10 new variables to eHARS. PS18-1802 recipients are required to collect and report
data on these 10 variables for evaluation of their D2C NIC programs. These new variables are located in the
eHARS 4.10.5 Adult Case Report Form (ACRF) document under the “Follow-up Investigation” tab. Further details
about each variable may be found in the eHARS Technical Reference Guide (TRG).





Beginning in January 2019, all health departments receiving PS18-1802 funds must collect data for the
10 D2C NIC variables.
Health departments must enter or import D2C NIC data into eHARS at least twice yearly, by the June and
December eHARS data transfers.
For 2019, the only required D2C NIC data transfer will be December 2019. However, we strongly
encourage recipients to do a data transfer in June 2019 to ensure that the process works.
Data transfers should include all records for which an investigation was opened. They should not be
limited to just those records for which an investigation has been completed.

Preparation of this Document
The Division of HIV/AIDS Prevention (DHAP), Centers for Disease Control and Prevention, led the development
of Data to Care indicators previously described in the PS18-1802 Evaluation and Performance Measurement
Plan. DHAP then requested the input of PS18-1802 recipients on how to accurately measure and report these
variables, and held a series of webinars in the summer and fall of 2018. The resulting document is the
culmination of this collaboration between DHAP and PS18-1802 health departments, including: Alaska,
Colorado, District of Columbia, Louisiana, Maryland, Michigan, Nebraska, New Jersey, New York State,
Philadelphia, San Francisco, South Carolina, Tennessee, Washington, and Wisconsin. DHAP would like to
acknowledge the essential role staff from these health departments provided in order to finalize this guidance
document.

2

Main Steps in Data-to-Care Not-in-Care Programs
The graphic below depicts the six main operational steps involved in a D2C NIC program.
Step 1: Identification
Use HIV surveillance and other data to identify persons with diagnosed HIV
infection who may not be receiving regular HIV medical care

Step 2: Investigation



Use other databases and information sources and conduct outreach to locate,
contact, and interview them and verify their care status
Example databases: Partner services, STD surveillance, Medicaid, AIDS Drug
Assistance Program (ADAP), vital statistics, electronic health records (EHR)

Step 3: Linkage to HIV Medical Care
Link persons confirmed not to be in care to HIV medical care

Step 4: Support Services
Identify and address clients’ need for support services (e.g., housing and
transportation, mental health and substance use treatment, medication adherence
support) to facilitate retention in care and adherence to HIV treatment

Step 5: HIV Prevention Services
Provide or link clients to appropriate HIV prevention services, including partner
services

Step 6: Feedback Loop
Update and improve surveillance data with information obtained through the Datato-Care process to facilitate future use of surveillance data for program purposes

3

Data-to-Care Not-in-Care Logic Model
The logic model for the PS18-1802 D2C NIC strategy is shown below. CDC has identified two short-term and one
intermediate intended outcomes – indicated with bold font in the logic model – that will be followed for
monitoring PS18-1802 D2C NIC program outcomes at the national level.
Data-to-Care Logic Model: Identifying persons diagnosed with HIV who are not in HIV medical care
and linking them to care
Activities
Outputs
Short-term Intended
Intermediate & Long-term
Outcomes
Intended Outcomes
Step 1 – Identification
 # of persons presumed
 Generate a list of persons with
not to be in HIV medical
HIV (PWH) presumed not to be
care
in HIV medical care
Step 2 – Investigation
 # of persons prioritized for
 Use other data sources to
outreach
investigate care status
 # of persons located,
 Prioritize list for outreach
contacted, and
 Conduct outreach to locate,
interviewed
contact, and interview persons  # of persons confirmed not
on prioritized list to verify care
to be in HIV medical care
status
Step 3 – Linkage to Care
 # of persons linked to HIV
 Link persons confirmed not to
medical care
be in care to HIV medical care
Step 4 – Support Services
 # of persons linked to
 Link to support services that
support services that
facilitate retention in HIV
facilitate retention in HIV
medical care and adherence to
medical care and
treatment
adherence to treatment
Step 5 – HIV Prevention Services
 # of persons provided or
 Provide or link to HIV
linked to HIV prevention
prevention services, including
services, including partner
partner services
services
Step 6 – Feedback Loop
 # of surveillance records
 Update surveillance data with
updated
information obtained through
data-to-care process

 Increased identification of

PWH who are not in HIV
medical care

 Increased linkage to and

retention in HIV medical
care among PWH
 Increased linkage of PWH
to support services that
facilitate retention in HIV
medical care and
adherence to treatment
 Increased provision of or
linkage to HIV prevention
services, including partner
services
 Increased completeness,
timeliness, and quality of
HIV surveillance data

 Increased HIV viral load

suppression among PWH
 Improved health outcomes for

PWH
 Reduced HIV transmission

 Improved usefulness of HIV

surveillance data for identifying
PWH who are not in HIV
medical care

4

Evaluation Questions
CDC has identified three evaluation questions to address at the national level:




To what extent are D2C programs accurately identifying PWH who are not in HIV medical care?
To what extent are D2C programs linking not-in-care PWH to HIV medical care?
To what extent do PWH who are linked to HIV medical care through D2C programs achieve viral
suppression?

Indicators
As described in the PS18-1802 Evaluation and Performance Measurement Plan, CDC will be tracking three key
indicators to measure the three outcomes selected for monitoring PS18-1802 D2C NIC program outcomes at the
national level. These indicators, and the numerators and denominators needed to calculate them, are shown in
the table below. A SAS program will be made available for health departments to generate these indicators from
eHARS locally for local use. Health departments may identify additional measures or indicators to follow at the
local level, based on specific jurisdictional needs or special populations their programs are aiming to reach.

Table 1. Key PS18-1802 data-to-care not-in-care outcome indicators
Intended Outcome
Increased identification of
PWH who are not in HIV
medical care.

Increased linkage to HIV
medical care among PWH
identified through D2C
activities.

Increased HIV viral load
suppression among PWH
identified through D2C
activities.

Evaluation Question

Indicator

Numerator & Denominator

D2C NIC Identification:
Percentage of presumptively notin-care PWH with an investigation
opened (initiated) during a
specified 6-month evaluation time
period, who were confirmed
within 90 days after the
investigation was opened not to
be in care

Denominator:
Number of presumptively not-in-care
PWH with an investigation opened
(initiated) during a specified 6-month
evaluation time period

To what extent are health
departments able to link to
HIV medical care PWH who
are confirmed through D2C
activities not to be in care?

D2C NIC Linkage:
Percentage of PWH confirmed
during a specified 6-month
evaluation time period not to be
in care, who were linked to HIV
medical care within 30 days after
being confirmed not to be in care

Denominator:
Number of PWH confirmed during a
specified 6-month evaluation time
period not to be in care

To what extent is HIV viral
load suppression achieved
among PWH who are linked
to HIV medical care after
being confirmed through D2C
activities not to be in care?

D2C NIC Viral Suppression:
Percentage of PWH linked to HIV
medical care during a specified 6month evaluation time period,
who achieved HIV viral
suppression within six months
(180 days) after being linked to
care

Denominator:
Number of PWH linked to HIV
medical care during a specified 6month evaluation time period

To what extent are health
departments able to use HIV
surveillance and other data
to identify PWH who are not
in HIV medical care?

Numerator:
Of those in the denominator, the
number confirmed within 90 days
after the investigation was opened
not to be in care

Numerator:
Of those in the denominator, the
number linked to HIV medical care
within 30 days after being confirmed
not to be in care

Numerator:
Of those in the denominator, the
number who achieved HIV viral
suppression within six months (180
days) after being linked to care

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Variables Needed to Assess Key Outcome Indicators
To calculate outcome indicators, it is necessary to collect and enter in eHARS the data needed to perform the
calculations. For example, the “identification” indicator, which can be used to monitor progress in using HIV
surveillance and other data to accurately identify PWH who are not in HIV medical care, measures the
percentage of presumptively not-in-care PWH with a D2C NIC investigation opened (initiated) during a specified
6-month evaluation time period that were confirmed not to be in care. To calculate this indicator, the following
information must be collected:






The date the person was placed on the presumptive NIC list
Whether a not-in-care investigation was opened (initiated)
If a not-in-care investigation was opened, the date it was opened
For those with an investigation opened, whether the person was confirmed not to be in care
If they were confirmed not to be in care, the date this determination was made

CDC has added 10 new variables to eHARS for which health departments receiving PS18-1802 funds must collect
and report data so their D2C NIC indicators can be calculated. The table below presents the new variables, along
with their labels, value options and definitions. Health departments planning to monitor additional indicators as
part of their local D2C evaluations will need to identify the variables needed for calculating their local-use
indicators and collect those data for those variables, as well.

Table 2. PS18-1802 data-to-care not-in-care data elements and definitions
Data element
Data element 1
(invest_type_cd)

Variable

Definition

Type of investigation
0 – Transmission cluster (TC)
1 – Not in care (NIC)

Data element 2
(invest_ident_method)

How person was first identified as NIC
(presumptively or confirmed)?

The source from which you have identified the person
as NIC.

01 - Health department HIV surveillance
system (e.g., eHARS)

By using data in a “self-contained” HIV surveillance
system only.

02 – Heath department integrated data
system

By using data in an integrated data system, which
contains HIV surveillance data as well as other types of
data (e.g., care data), or by running an application that
automatically integrates data from multiple sources,
such as eHARS, CAREWare, and Medicaid databases.

03 – Provider report

By a health care provider.

04 – Transmission cluster investigation

Through the investigation of a transmission cluster.

05 – Elevated viral load investigation

Through the investigation of persons with elevated HIV
viral load.

06 – Partner services investigation

Through partner services investigations.

07 – Medical Monitoring Project (MMP)

Through MMP activities (e.g., MMP participant
interview).

88 – Other

Other sources that do not fit in any of the above.

Data element 3
(invest_ident_dt)

Date first identified as not in care
(presumptively or confirmed)

Data element 4
(invest_incl)

Included for investigation?

Was the person included in or excluded from
investigation to confirm their care status?

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Data element

Variable

Definition

Y – Included in investigation

Health department made further efforts to investigate
after person was placed on presumptive NIC list. This
may include (but is not limited to) matching the
presumptive NIC list to other data systems or
programs to determine residence, vital status, and care
status; or conducting a field investigation.

N – Excluded from investigation

Did not meet programmatic criteria for follow-up.

Data element 5
(invest_start_dt)

Date investigation opened*

If feasible to collect, this is the earliest date that any
investigation was conducted following generation of
the presumptive NIC list (regardless of whether the
presumptive NIC list was generated from a “selfcontained” HIV surveillance system or an integrated
system). If field investigation, this would be the date
the field investigation began. If matching with other
data, it would be the date the database or record
search began. If both a field investigation and
database or record search are conducted, you would
use the earlier of the two dates.

Data element 6
(invest_dispo)

Disposition, care status investigation

Result of the investigation.

1 – Deceased

There is evidence that the person is dead (you will be
prompted to update the person’s vital status and date
of death in eHARS).

2 – Resides out of jurisdiction

There is evidence that the person resides outside of
the D2C catchment area defined by the health
department (you will be prompted to add the out-ofjurisdiction address into eHARS).

3 – In care

There is either laboratory (in eHARS), self-report, or
other evidence that the person is receiving regular HIV
medical care.

4 – Not in care (confirmed)

Confirmed with the person that he or she is indeed
NIC.

5 – Unable to determine

Unable to obtain adequate information to determine
care status.

Data element 7
(invest_dispo_dt)

Investigation disposition date

Date a person’s care status disposition was
determined.

Data element 8
(invest_dispo_method)

Basis of care status investigation disposition

How was the care status disposition determined?

1 – Database/record search, only

Health department only searched databases for
residential location, vital status, and care status and
did not conduct field investigation or contact the
individual.

2 – Patient contact/field investigation, only

Health department learned the person’s residential
location, vital status, and care status only through field
investigation or contacting the health care provider or
the individual.

3 – Database/record search and patient
contact/ field investigation

A combination of the above two methods.

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Data element
Data element 9
(int_dispo)

Data element 10
(int_dispo_dt)

Variable
Disposition, linkage or re-engagement
intervention

Definition
Linkage or re-engagement intervention – Defined as an
action taken by the program to facilitate a client’s
entry or re-entry into HIV medical care (e.g., ARTAS,
scheduling the appointment, reminding the client of
the appointment, accompanying the client to their
appointment, follow-up to ensure that the
appointment took place).
Linked to or re-engaged in care – Defined as the client
attending an appointment for HIV medical care after
having been identified as being NIC.

1 – No intervention initiated

Program did not offer any linkage or re-engagement
intervention to the client.

2 – Linkage/re-engagement intervention
declined by client

Program offered intervention, but it was declined by
the client.

3 – Returned to care before intervention
was initiated

The client entered or resumed care without any
additional linkage intervention.

4 – Linkage/re-engagement intervention
initiated; client was not successfully
linked to/re-engaged in care

The client did not enter or resume care, despite the
program’s intervention efforts.

5 – Linked to/re-engaged in care,
documented

The client was linked to/re-engaged in care by the
program’s intervention, and this was confirmed
through documentation [e.g., laboratory data, report
from medical care provider (verbal or written), medical
record review, other record review, other database,
ARV prescription filled or refilled].

6 – Linked to/re-engaged in care, client
self-report, only

The client was apparently linked to/re-engaged in care
by the program’s intervention, but this was
determined only through client’s self-report, without
any additional confirmation

7 – Linkage/re-engagement status
unknown

It is unknown whether the client entered or returned
to care.

Date returned to, linked to, or re-engaged in
care

If return, linkage, or re-engagement was confirmed:
Date of documented evidence that client attended an
HIV medical care appointment after being identified as
NIC (e.g., laboratory report, verbal or written report
from medical care provider, medical record review,
other record review, other database, ARV prescription
filled or refilled).
If return, linkage, or re-engagement was determined
by client self-report, only:
Date client reports having attended an HIV medical
care appointment after being identified as NIC.

* In eHARS, only the term “opened” is used in reference to the investigation; however, the terms “opened” and
“initiated” are synonymous.

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Methods for Calculating Key Outcome Indicators
The table below shows the methods for calculating each of the three key outcome indicators. An example of the
evaluation time period [E1, E2] could be [07/01/2019, 12/31/2019].

Table 3. PS18-1802 data-to-care not-in-care indicators, numerators, denominators, and methods of
calculation
Indicators

Numerators & Denominators

Methods of Calculation

Identification:
Percentage of presumptively
not-in-care PWH with an
investigation opened
(initiated) during a specified
6-month evaluation time
period, who were confirmed
within 90 days after the
investigation was opened not
to be in HIV medical care

Denominator:
Number of presumptively not-in-care
PWH with an investigation opened
(initiated) during the evaluation time
period [E1, E2]

Total number of unique cases satisfying the following
criteria:
 invest_ident_method = “01” or “02” or “03,” and
 invest_incl = “Y” and E1 ≤ invest_start_dt ≤ E2

Numerator:
Of those in the denominator, the
number confirmed within 90 days after
the investigation was opened not to be
in HIV medical care

Of the cases satisfying the above criteria, the number of
cases with:
• invest_dispo = “4” and
• invest_dispo_dt – invest_start_dt ≤ 90 days

Linkage:
Percentage of PWH confirmed
through D2C activities during
a specified 6-month
evaluation time period not to
be in care, who were linked to
HIV medical care within 30
days after being confirmed
not to be in HIV medical care

Denominator:
Number of PWH confirmed during the
evaluation time period [E1, E2] not to
be in HIV medical care

Total number of unique cases satisfying the following
criteria:
• invest_ident_method = “01” or “02” or “03,” and
• invest_dispo= “4” and E1 ≤ invest_dispo_dt ≤ E2

Numerator:
Of those in the denominator, the
number linked to HIV medical care
within 30 days after being confirmed
not to be in HIV medical care

Of the cases satisfying the above criteria, the number of
cases with:
• int_dispo = “3”, “5” or “6”, and
• int_dispo_dt – invest_dispo_dt ≤ 30 days

Viral suppression:
Percentage of PWH linked
through D2C activities to HIV
medical care during a
specified 6-month evaluation
time period, who achieved
HIV viral suppression within
six months (180 days) after
being linked to HIV medical
care

Denominator:
Number of PWH linked to HIV medical
care during the evaluation time period
[E1, E2]

Total number of unique cases satisfying the following
criteria:
• invest_ident_method= “01” or “02” or “03,” and
• int_dispo = “3”, “5” or “6”, and
• invest_dispo= “4”
• E1 ≤ int_dispo_dt ≤ E2

Numerator:
Of the cases satisfying the above criteria, the number of
Of those in the denominator, the
cases with:
number who achieved HIV viral
• sample_dt – int_dispo_dt ≤ 180 days
suppression within six months (180
[where sample_dt is the earliest specimen collection
days) after being linked to HIV medical date that is on or after int_dispo_dt and is associated
care
with an HIV-1 viral load test result that is below (<) 200
copies/mL or the result interpretation is below
detection limit]

9

Collecting Data for Data-to-Care Not-in-Care Variables
Health departments implementing D2C NIC programs can use a variety of approaches for tracking activities and
outcomes. Some programs have developed unique electronic case management systems, some have created
databases using commercial software programs (e.g., Excel, REDCap, Access), some may opt to use eHARS.
Health departments should identify best practices to facilitate tracking activities and outcomes. Health
departments with existing D2C databases should crosswalk the 10 eHARS D2C NIC variables with their current
D2C databases and modify or add variables in their current databases, as necessary. Data may be extracted
from these databases and electronically imported into eHARS. Health departments newly implementing D2C
NIC programs and developing local D2C data systems should ensure that the 10 eHARS D2C NIC variables are
included in these systems.
The new eHARS D2C NIC variables are not included on the hard copy of the CDC Adult Case Report Form (ACRF)
and health departments are not required to document this information in hard copy. However, for some D2C
workers documenting the information for the variables in hard copy can facilitate this process. On the following
page is an example of a template that includes all the new eHARS D2C NIC variables, labels and skip patterns.
This example template can be tailored to suit jurisdictional data collection needs and can also be used by health
departments with existing systems for cross-walking purposes. Spending time up front to ensure variables in
local systems are comparable and data are extracted correctly will help ensure that high quality data are
reported and used for evaluation.
Understanding the definitions of the D2C NIC variables will ensure that the data entered into D2C data systems
are reliable, standardized, consistent, and valid. If there are different interpretations of the definition of
variables in the systems used or by staff, the indicators calculated in eHARS from the D2C NIC data may not
accurately reflect program performance. Training and guidance may include:
a. Definitions of variables and response options
b. Rationale for why each variable is collected and how variables may be used to answer specific
questions
c. Explanation of skip patterns and conditional relationships between variables
d. Description of the data collection process and tips for avoiding common errors during data
collection
Finally, is important to solicit and incorporate feedback from staff and system users about the data collection
and import/entry processes in the beginning and throughout the project period.

10

Example of a data collection tool that could be used for collecting data during data-to-care not-in-care
investigations
1. How person was first identified as not in care invest_ident_method

 01- Health department HIV surveillance
system (e.g., eHARS) (go to #2)

 02- Health department integrated data
system (go to #2)

 03- Provider report (go to #2)

 06- Partner services investigation
(go to #2 and then #7)

 04- Transmission cluster
investigation (go to #2 and
then #7)

 07- Medical Monitoring Project
(MMP)
(go to #2 and then #7)

 05- Elevated viral load
investigation (go to #2 and
then #7)

 88- Other (go to #2)
M

2. Date first identified as not in care invest_ident_dt
3. Included for investigation? invest_incl

(Date investigation opened invest_start_dt)

 Yes

M

Date investigation opened

4. Disposition, care status investigation

M

D

D

Y

Y

Y

M

D

D

Y

 No (Excluded

Y

Y

Y

Stop Here)

invest_dispo

 1- Deceased (go to #5 - 6 and then STOP)

 4- Not in care (confirmed) (go to #5 - 7 and
linkage date if linked)

 2- Resides out of jurisdiction (go to #5 - 6 and then STOP)

 5- Unable to determine
(go to #5 - 6 and then STOP)

 3- In care (go to #5 - 6 and then STOP)
M

5. Investigation disposition date invest_dispo_dt
6. Basis of care status disposition?

(Optional)

M

D

D

Y

Y

Y

Y

invest_dispo_method

 3- Database/record search and patient contact/field investigation

 1- Database/record search, only
 2- Patient contact/field investigation, only

7. Disposition, linkage or re-engagement intervention (answer only if confirmed not in care) int_dispo
 3- Returned to care before
intervention was initiated

 1- No intervention initiated
 2- Linkage/re-engagement
intervention declined by client
Date returned to, linked to, or reengaged in care int_dispo_dt

 5- Linked to/re-engaged in care,
documented*

 6- Linked to/re-engaged in
care, client self-report, only

M

M

M

M

Y

Y

Y

 4 – Linkage/re-engagement
intervention initiated, not
successfully linked to/re-engaged
in care
Y

 7- Linkage/re-engagement status
unknown

*Examples of types of documentation: laboratory data, report from medical care provider (verbal or written), medical record
review, other record review, other database, ARV prescription filled or refilled.

11

Reporting Data for Data-to-Care Not-in-Care Variables to CDC via eHARS
The 10 variables CDC has added to eHARS, for which PS18-1802 recipients are required to collect and report
data for evaluation of their D2C programs, are located in the eHARS 4.10 Adult Case Report Form (ACRF)
document under the “Follow-up Investigation” tab. Further details about each variable may be found in the
eHARS Technical Reference Guide (TRG).
CDC needs accurate reporting of the three key D2C NIC outcome indicators to monitor and evaluate outcomes
for PS18-1802 programs, ensure accountability for funds appropriated by the U.S. Congress for HIV prevention,
and inform the Division of HIV/AIDS Prevention’s (DHAP) planning. Beginning in January 2019, all health
departments receiving PS18-1802 funds must collect data for the 10 D2C NIC variables. The first required D2C
data transfer for all health departments will be December 2019. However, health departments are strongly
encouraged to do a data transfer in June 2019 to ensure that the process is working correctly. Data transfers
should include all records for which an investigation was opened. They should not be limited to just those
records for which an investigation has been completed. Subsequently, health departments will enter or import
D2C NIC data into eHARS at least twice yearly, by the June and December eHARS data transfers (see table
below).

Table 4. PS18-1802 data-to-care not-in-care data: availability and reporting timeline
Indicator 1:
Confirmation of NIC
status within 90 days
after investigation
opened

Indicator 2:
Linkage to HIV
medical care within 30
days after person
confirmed NIC

Indicator 3:
Achievement of viral
suppression within 6
months (180 days) after
person linked to care

August 31,
Year X
December data transfer,
Year X

January 31,
Year X+1
June data transfer,
Year X+1

February 28/29,
Year X+1
June data transfer,
Year X+1

July 31,
Year X+1
December data transfer,
Year X+1

Evaluation Time Period 1: January 1 – June 30
Data available locally in
jurisdictional databases1
Data entered or uploaded into
eHARS

October 31,
Year X
December data transfer,
Year X

Evaluation Time Period 2: July 1 – December 31
Data available locally in
April 30,
jurisdictional databases1
Year X+1
Data entered or uploaded into
June data transfer,
eHARS
Year X+1
1
Allowing 30 days for reporting and data entry

12

Data Management and Quality Assurance of Data-to-Care Not-in-Care Data
Routine quality assurance checks should be implemented on processes throughout the data life cycle to ensure
completeness and timeliness of data—including data collection/documentation, data entry/import, and
reporting data to CDC. Guidance for D2C NIC data management and quality assurance are forthcoming.
Guidance and tools will be added to this document as they are developed.

Data Security and Confidentiality
All data used in D2C NIC activities should be handled in a secure and confidential manner in accordance with the
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) Data Security and
Confidentiality Guidelines:
(http://www.cdc.gov/nchhstp/programintegration/docs/PCSIDataSecurityGuidelines.pdf).
This includes all instances in which data are shared with partners internal and external to the health
department. All partners should be made aware and comply with security and confidentiality guidelines and
protocols, including how data should be transferred, stored, and used.

13

Appendix
Below are flow diagrams depicting the steps involved in identifying persons with HIV who are not in HIV medical
care and linking them to care in two models: the Health Department Model (Figure 1) and the Collaborative
Model (Figure 2). These diagrams were used as a basis for CDC’s data-to-care (D2C) not-in-care (NIC) evaluation,
and may be helpful to some health departments as they flesh out their D2C NIC program descriptions.

14

Figure 1. Data-to-Care Health Department Model: Key Steps

Preparatory
Activities

 Ensure complete laboratory reporting
 Conduct routine death ascertainment
 Identify supplemental data sources for
ascertaining care status and obtaining
contact information
 Establish data-sharing agreements,
as needed

Step 1:
Identification

Generate Presumptive
Not-In-Care (NIC) List
using HIV surveillance or
integrated database

Dispositions

Excluded from Investigation

Investigate presumptive NIC list
to produce Refined NIC List:
 Request Soundex Check
 Match list to other databases
 Investigate other information sources
 Contact last known provider(s)

Deceased
OR

Out of Jurisdiction

1

OR

Step 2:
Investigation

Prioritize refined NIC list
for field investigation

In Care

Care Status Unknown
(Not prioritized)

Conduct outreach
to locate and contact
client for interview

Deceased
OR

Out of Jurisdiction

1

OR

In Care
OR

Interview client
to verify care status

Care Status Unknown
(Unable to contact or declined
interview)

In Care
OR

Not in Care
Step 3:
Linkage to Care

(Confirmed)

Initiate intervention
to link client to medical care
Returned to Care Before
Intervention Initiated
Linkage Assistance
Declined by Client
OR

Step 4:
Support Services

Linked to Care
OR

Step 5:
Prevention Services

Not Linked to Care
OR

 Screen for support service
needs
 Link to appropriate services

Linkage Status Unknown

Provide or link to HIV
prevention services,
including partner services

Update HIV
surveillance data

Step 6:
Feedback Loop
1

Contact other jurisdiction

15

Figure 2. Data-to-Care Collaborative Model: Key Steps

Step 1:
Identification

Preparatory
Activities

Health Department:
 Ensure complete laboratory reporting
 Conduct routine death ascertainment
 Identify supplemental data sources for
ascertaining care status and obtaining
contact information
 Establish data-sharing agreements,
as needed

Collaborating Provider:
 Generate Provider-initiated Presumptive
NIC List using electronic health record
system or other medical record system

Give provider-initiated
presumptive NIC list
to health department

Generate Presumptive
Not-In-Care (NIC) List
using HIV surveillance or
integrated database

Dispositions

Excluded from Investigation

Investigate presumptive NIC list
to produce Refined NIC List:
 Request Soundex Check
 Match list to other databases
 Investigate other information sources
 Contact last known provider(s)

Deceased
OR

Out of Jurisdiction
Query refined NIC list to
identify persons last seen
by collaborating provider

2

OR

In Care

Give provider-specific
refined NIC list to
collaborating provider

Health Department:
Add to refined NIC list

Prioritize remaining refined
NIC list for field investigation

Notify Health Department
for follow-up

Conduct outreach
to locate and contact
client for interview

Step 2:
Investigation

Care Status Unknown
(Not prioritized)

Unable to locate and contact
client or client declined
interview

Dispositions

OR
2

OR

In Care

Collaborating Provider:
Locate and contact
client for interview

Deceased
OR

Out of Jurisdiction

Deceased
Out of Jurisdiction

Interview client
to verify care status

1,2

OR

Care Status Unknown
(Unable to locate and contact or
client declined interview)

OR

In Care

Interview client
to verify care status

In Care
OR

Not in Care

In Care Elsewhere

(Confirmed)

OR

Not in Care
(Confirmed)

Attempt to link
client to care

Unable to link
client to care

Step 3:
Linkage to Care

Linked to Care by Provider

Notify Health
Department
for follow-up

Notify Health Department
of dispositions

Health Department:
Initiate intervention to link
client to medical care
Returned to Care Before
Intervention Initiated
Linkage Assistance
Declined by Client
OR

Linked to Care
OR

Not Linked to Care
OR

Step 4:
Step 5:
Prevention Services Support Services

Linkage Status Unknown

 Screen for support service
needs
 Link to appropriate services

Provide or link to HIV
prevention services,
including partner services
Health Department:
Update HIV surveillance data

Health Department Activities
Collaborating Provider Activities

1

Collaborating Provider: Notify health department for
follow-up
2
Health Department: Contact other jurisdiction

Step 6:
Feedback Loop

16