Form 0000 National Survey of Health Information Exchange Organizat

Form Approved

OMB No. 0990-

Exp. Date XX/XX/20XX

2018 Health Information Organization (HIO) Survey

The nationwide survey of HIOs is being led by Dr. Julia Adler-Milstein at the University of California, San Francisco and is sponsored by the Office of the National Coordinator for Health IT (ONC). Over the past eight years our research team has conducted five nationwide surveys of organizations working to promote Health Information Exchange (HIE) to determine the state of current efforts, scope of activities, and financing. Our most recent findings were published in the March 2016 issue of Health Affairs and offered an independent, comprehensive evaluation of HIE progress.

As you know, the field continues to change rapidly, and this survey will enable us to focus on new achievements and identify challenges to create a current and accurate picture of HIE efforts.

We request a brief amount of your time to complete our survey. Participation is completely voluntary and will contribute to a research study. We realize that you receive many such requests and thank you in advance for your time.

The survey includes questions in three broad areas:

1. Organizational Demographics

2. Information Blocking

3. Implementation/Use of Standards

We will not make ANY responses to questions publicly available or attribute responses to any specific organization. These data will only be presented in aggregate and will be published in a peer-reviewed journal (which we will be happy to send to you) and other publicly available publications and presentations. We will create a de-identified dataset to share with ONC.

To thank you for your time, upon completion of the survey you will be offered a $50 amazon.com gift certificate. If you are not eligible for our survey, you will be offered a $10 amazon.com gift certificate.

If you have any questions, please contact the project investigator, Dr. Julia Adler-Milstein ([email protected] or 415-476-9562).

If you are involved with multiple efforts, please let us know so that we can send you another link to the survey. This will ensure that you fill out only one response per effort. We also ask that you respond to survey questions only from the perspective of your organization. Please do not attempt to summarize multiple efforts that may be affiliated with your organization (For example, if you are a state-level HIO, please do not respond on behalf of local HIOs with whom you work.)

According to the Paperwork Reduction Act of 1995, no persons are required to respond to a collection of information unless it displays a valid OMB control number. The valid OMB control number for this information collection is 0990-0379. The time required to complete this information collection is estimated to average 10 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, to review and complete the information collection. If you have comments concerning the accuracy of the time estimate(s) or suggestions for improving this form, please write to: U.S. Department of Health & Human Services, OS/OCIO/PRA, 200 Independence Ave., S.W., Suite 336-E, Washington D.C. 20201, Attention: PRA Reports Clearance Officer

We would first like to ask you about the type of organization for which you are responding:

Screening Questions

1. As of January 1, 2019 was your organization (select one):

Building (or planning for) the infrastructure or services to support*, or pilot testing, electronic health information exchange across your network (End of survey)

Supporting* “live” electronic health information exchange across your network

No longer pursuing or supporting* electronic health information exchange (End of survey.)

Never pursued or supported* electronic health information exchange (End of survey.)

2. Does electronic health information exchange take place between independent entities (i.e., between or among those that are not affiliated with one another)**?

Yes

No (End of survey)

* Supporting is defined as offering a technical infrastructure that enables electronic health information exchange to take place.

**Independent entities are defined as institutions with no financial relationship or shared, central governance; HIE between independent entities requires that at least one entity is independent of the other(s).

From this point forward, required questions are marked with an asterisk.

Organizational Demographics

1. Please indicate if your organization is (select all that apply):

State HIE or State-designated Entity (SDE)

Regional or Local HIE

Private, Enterprise HIE

Network-of-Networks (i.e., facilitating exchange between networks)

Public Health Department or Public Health Agency

State Medicaid agency

State Government (other than state Medicaid or Public Health)

Healthcare Delivery Organization (e.g., hospital, IDN, IPA, ambulatory practice)

Health Information Service Provider (HISP)

Technology Vendor (End of survey if only this option is selected)

Other (please list):     

2. *Please report whether each type of stakeholder is involved in your HIE in the following ways:

Answer Options	Provides Data	Views or Receives Data	Pays to Participate in HIE
INPATIENT SETTINGS
Veterans Affairs (VA) Hospital
Publicly-Owned Hospital (e.g., state, county)
Private Medical/Surgical Acute Care Hospital
Private Psychiatric, Rehabilitation, or Long-Term Acute Care Hospital
Long-Term Care Provider (e.g., nursing home, skilled nursing facility)
AMBULATORY SETTINGS
Community Health Center or Federally Qualified Health Center
Independent Physician Practice or Practice Groups (e.g., IPAs)
Hospital-Owned or Health System-Owned Physician Practice
Behavioral Health Provider (e.g., community mental health, SUD/OUD)
OTHER SETTINGS
Independent Laboratory
Independent Radiology/Imaging Center
Pharmacy
Public Health Department
Emergency Medical Service
Private Payer (e.g., Blue Cross)
Public Payer (e.g., Medicare, Medicaid)
Federal Agency (e.g., SSA, VA/DOD)
Social Service Agency (e.g., housing, transportation, food, financial services)
FEMA or Other Disaster Relief Organization
Other (please specify):     

(If in #2 one or more hospital types selected as providing or receiving data):

3. *Within the past year, please estimate the number of acute care hospitals (individual institutions, not systems; including VA, public, and private) that are directly connected to your HIE and:

Provide data	      Do not know
Receive or view data	      Do not know

4. Please ESTIMATE the number of licensed healthcare professionals with prescribing privileges (e.g., MD, DO, NP) who are:

Eligible to participate (e.g., have an “account”)       Do not know

Participate (i.e., are active users)       Do not know

5. If you have a Master Patient Index (MPI), please ESTIMATE how many patients are in your MPI and, if known, ESTIMATE what percent have at least one CCDA associated with them?

Estimated Number of Patients in MPI	Estimated Percent of Patients in MPI with CCDA(s)
      Do not know	      Do not know

6a. Please ESTIMATE the number of EHR vendors to which you have built interfaces:

      Do not know

6b. Please list the top 5 EHR vendors to which you have built interfaces that represent the largest volume of participants in your HIE:

      Do not know

7. *In which state(s) does your HIE facilitate health information exchange?

All

Alabama Alaska Arizona Arkansas

California Colorado Connecticut Delaware

Distr. of Columbia Florida Georgia Hawaii

Idaho Illinois Indiana Iowa

Kansas Kentucky Louisiana Maine

Maryland Massachusetts Michigan Minnesota

Mississippi Missouri Montana Nebraska

Nevada New Hampshire New Jersey New Mexico

New York North Carolina North Dakota Ohio

Oklahoma Oregon Pennsylvania Puerto Rico

Rhode Island South Carolina South Dakota Tennessee

Texas Utah Vermont Virginia

Washington West Virginia Wisconsin Wyoming

8. *For the state(s) selected in the prior question, please select the specific hospital service area(s) ^† in which your HIE facilitates exchange.

^† Hospital Service Areas are geographic areas defined by the Dartmouth Atlas.

[Populate list of HSAs for each State reported in prior question and have check all option for HSAs in a given state]      

9. Which of the following services do you offer that are used by participants in your HIE? Select all that apply:

GENERAL SERVICES
Provider Directory
Consent Management
Community Health Record: Aggregation of health information from across the community served by the HIE
Record Locator Service
Messaging using the Direct Protocol
Receive CCDAs
Parse and store data elements from a CCDA
Transform other document types or repositories into CCDAs (e.g., MDS, OASIS, Community Health Record)
Alerting services (e.g., gaps in care) and/or event notification (e.g., Admit-Discharge-Transfer)
Connection to prescription drug monitoring program (PDMP)
Prescription fill status and/or medication fill history
Provide data to third party disease registries (e.g., Wellcentive, Crimson)
Advanced care planning (i.e., POLST/MOLST)
Integrating claims data
Other (please list):      

Services related to VALUE-BASED PAYMENT MODELS
Providing data to allow analysis by networks/providers
Generating quality measures
Validating quality measures
Reporting quality measures to payers/programs on behalf of participants
Operating as a clinical registry including a qualified clinical data registry (QCDR)
Analytics (e.g., risk stratification)
Other (please list):      

10. Does your HIE: (check all that apply)

Sell/provide your infrastructure to other HIEs
Buy/use infrastructure from another HIE
Connect to other HIEs in SAME state
Connect to other HIEs in DIFFERENT state(s)

11. *Is your HIE currently using the following national networks to exchange data?

	Operational (i.e., using to exchange data)
CareinAlliance
CommonWell
Digital Bridge
DirectTrust
Surescripts
Strategic Health Information Exchange Collaborative (SHIEC)/Patient Centered Data Home (PCDH)
e-Health Exchange
Carequality
Other (please list):      

12. (If none selected in prior question) Please select reason(s) why your HIE is not operational with any of the national networks listed above? Select all that apply:

Do not see value in what they provide (i.e., services not useful)

Perceive them as competitors

Participation costs too high

Not a priority

Other (please list):      

13. Is your HIE planning to participate in the Trusted Exchange Framework and Common Agreement?

Yes No Don’t know

14. How is your HIE planning to respond to the proposed Trusted Exchange Framework and Common Agreement:

	Increase	No change	Decrease	Not Applicable
Types of services offered
Selling/providing your infrastructure to other HIEs
Buying/using infrastructure from another HIE
Partnering with HIEs in SAME region/state
Partnering with HIEs in DIFFERENT regions/states
Other (please list):      

15. How long has your HIE been operational (i.e., from completion of initial pilot to present):

Less than one year

1-2 years

3-5 years

6-10 years

11 or more years

16. Do you receive funding from a state innovation model (SIM) grant?

Yes

No

17. *Do entities participating in your HIE cover 100% of your operating expenses?

Yes

No

17a. (If no) Do you expect to earn sufficient revenue from participating entities to cover 100% of your operating expenses in the future?

Definitely not

Probably not

Maybe

Probably will; how long do you expect that it will take?       Years

Definitely will; how long do you expect that it will take?       Years

Don’t know

18. To what extent does each of the following factors pose a moderate or substantial challenge to your development? Select all that apply:

Answer Options	Moderate or Substantial
Competition from other health information exchange efforts
Competition from health IT system vendors offering HIE solutions (e.g., EPIC’s CareEverywhere)
Stakeholder concerns about their competitive position in the market
Addressing federal government regulations
Addressing state government regulations
Addressing governance issues
Stakeholder concerns about privacy and confidentiality issues (e.g., HIPAA, consent)
Stakeholder concerns about cybersecurity issues (e.g., breaches)
Managing complexity of consent models
Developing a sustainable business model
Addressing technical barriers (e.g., procurement architecture, applications)
Limitations of current interface standards
Lack of resources to implement interface standards
Accurately linking patient data/patient matching
Ability to hire/retain staff
Integration of HIE into provider workflow
Other (please list):      

Information Blocking

Section 3022(a) of the Public Health Service Act (PHSA) defines information blocking as a practice that

• is likely to interfere with, prevent, or materially discourage access, exchange, or use of electronic health information;

• is not required by law and is not otherwise reasonable and necessary; and

• is committed by

  • a health information technology developer, exchange, or network who knows, or should know that the practice is likely to interfere with, prevent, or materially discourage access, exchange, or use of electronic health information; or

  • a health care provider who knows that the practice is unreasonable and likely to interfere with prevent, or materially discourage access, exchange, or use of electronic health information

19. In what form(s) have you experienced information blocking by EHR vendor(s)?

	Never/ Rarely	Sometimes	Often/ Routinely	Don’t Know
PRICE e.g., using high fees to avoid granting third-parties access to data stored in the vendor’s EHR system charging unreasonable fees to export data at a provider’s request (such as when switching vendors)
CONTRACT LANGUAGE e.g., using contract terms, warranty terms, or intellectual property rights to discourage exchange or connectivity with third-party changing material contract terms related to health information exchange after customer has licensed and installed the vendor’s technology
ARTIFICIAL TECHNICAL, PROCESS, OR RESOURCE BARRIERS e.g., using artificial technical barriers to to avoid granting third-parties access to data stored in the vendor’s EHR system
REFUSAL e.g., refusing to exchange information or establish connectivity with certain vendors or HIOs refusing to export data at a provider’s request (such as when switching vendors)
Other (please list):      

19. Overall, to what extent have you encountered EHR vendors engaging in information blocking?

What proportion of vendors?	Among vendors that engage in information blocking, how often do they do it?
All Most Some Few Don’t know or N/A (Don’t interact with EHR vendors)	Often/Routinely Sometimes Rarely/Never Varies by vendor Don’t know

19. When information blocking by EHR vendors occurs, does it vary by vendor marketshare?

Yes – predominantly by vendors with large marketshare

Yes – predominantly by vendors with moderate marketshare

Yes – predominantly by vendors with small marketshare

No - does not vary by marketshare

Don’t know

19. In what form(s) have you experienced information blocking by hospitals and health delivery systems?

	Never/Rarely	Sometimes	Often/Routinely	Don’t Know
ARTIFICIAL TECHNICAL, PROCESS, OR RESOURCE BARRIERS e.g., requiring a written authorization when neither state nor federal law requires it requiring a patient to repeatedly opt in to exchange for TPO
REFUSAL e.g., refusing to exchange sharing of information with competing providers, hospitals, or health systems
Other (please list):      

19. To what extent have you encountered hospitals and health delivery systems engaging in information blocking?

What proportion of hospitals and health systems?	Among hospitals and health systems that engage in information blocking, how often do they do it?
All Most Some Few Don’t know or N/A (Don’t interact with hospitals and health systems)	Often/Routinely Sometimes Rarely/Never Varies by hospital/health system Don’t know

Implementation and Use of Standards

24. Which of the following technical standard(s) does your organization regularly use to access and/or exchange provider data associated with a provider directory? Select all that apply:

Exchange standards based on IHE IT Infrastructure Technical Framework Supplement, Healthcare Provider Directory (HPD) Trial Implementation

HL7 v2 MFN interface

Exchange standards based on HL7 Fast Healthcare Interoperability Resources (FHIR)

Exchange based on ASC X12 274

Other (please list):      

Don’t know

25a. To what extent does your HIE electronically exchange care summaries among providers in a structured format (e.g., CDA, CCR, C32)?

To a great extent (go to 25b)

To a moderate extent (go to 25b)

To a small extent or not at all (skip to 26)

25b. To what extent do EHR installations you integrate with use the following templates for C-CDA?

C-CDA Template	All or most EHR installations	Some EHR installations	Few or no EHR installations	Don’t know
Continuity of Care Document (CCD)
Discharge Summary
Referral Note
Care Plan
Other C-CDA templates (please list):      

26. Which types of clinical and other health-related information are made available by/through your HIE (as part of a clinical document or as a discrete field)? Select all that apply:

NOTE: CCDA and CCDS (2015) data types included for reference

	Included in your HIE	Included in CCDA	Included in CCDS (2015)
Smoking Status
Problems
Medications
Filled Medications
Medication Allergies
Laboratory Test(s)
Laboratory Value(s)/Result(s)
Vital Signs
Care Plan Field(s), including Goals and Instructions
Procedures
Care Team Member(s)
Immunizations
Unique Device Identifier(s) (UDIs) for a Patient’s Implantable Device(s)
Assessment and Plan of Treatment
Goals
Health Concerns
Radiology Result(s)		 (Diagnostic Image Reports)
Clinical Notes		 (Note Section/Note Activity – C-CDA 2.1 Companion Guide
Discharge Disposition		
Substance Use Disorder (as defined in 42 CFR Part 2)
Social Determinants of Health (e.g., housing, food insecurity)		 (Veteran’s Status/Military History not included)
Admission and Discharge Dates and Locations
Encounters
Referrals
Discharge Instructions
Family Health History
Functional Status
Cognitiive Status
Gender Identity
Pediatric Vital Signs
Pregnancy Status
Reason for Hospitalization
Provenance
Other (please list):     

27a. Does your HIE engage in delivery of results or other information (“push”) to share data with your participants? Note: delivery of results of other information refers to a one-directional transmission, e.g. through an interface into an EHR or clinical registry.

Yes (go to 27b/c) No (skip to 28) Don’t Know (skip to 28)

27b. Please ESTIMATE your monthly average volume of outgoing transactions (with or without attachments):

      Don’t Know

27c. To what extent do EHR installations you integrate with receive what you send using each of the following standards?

	All or most EHR installations	Some EHR installations	Few or no EHR installations	Don’t know
HL7 v2 messages
HL7 CCDA documents
HL7 Fast Healthcare Interoperability Resources (FHIR) messages DSTU2 or later)
Some other open standard managed by HL7 or some other standards development organization
Some other proprietary standard published by the EHR vendor

28a. Does your HIE make data available via participant query to your HIE? Note: query refers to a query-and-response exchange, e.g. a request from one participant through an interface that results in a response delivered into an EHR.

Yes (go to 28b/c/d/e) No (skip to 29) Don’t Know (skip to 29)

28b. Please ESTIMATE your monthly average volume of queries placed (regardless of whether data available):

      Don’t Know

28c. Please ESTIMATE the average percent of queries with data returned:

      Don’t Know

28d. To what extent do EHR installations you integrate with use the following standards to query your HIE?

	Some or most EHR installations	Few or no EHR installations	Don’t know
IHE XDS (Cross-Enterprise Document Sharing)
IHE MHD (Mobile Access to Health Documents)
IHE XCA (Cross-Community Access)
NwHIN Specifications for Query for Documents and Retrieve Documents
HL7 Fast Healthcare Interoperability Specifications (FHIR) DSTU2 or later for data element query
HL7 Fast Healthcare Interoperability Specifications (FHIR) DSTU2 or later for document query

28e. What type(s) of responses do you return when you receive queries from your participants? Select all that apply:

Existing documents: respond with documents created by other systems such as EHRs and stored or accessible by the HIE

Dynamic documents: respond with a document produced upon demand from a community health record or other repository of clinical data

Other (please list):      

Don’t know

29a. Does your HIE exchange health information with other HIEs or private enterprise networks (e.g. integrated delivery systems) that are NOT part of your HIE (e.g., your HIE queries them or they query your HIE)?

Yes (go to 29b/c/d) No (end of survey) Don’t Know (end of survey)

29b. Which of the following standards do you use to exchange health information with these external entities? Check all that apply

IHE XDS (Cross-Enterprise Document Sharing)
IHE MHD (Mobile Access to Health Documents)
IHE XCA (Cross-Community Access)
NwHIN Specifications for Query for Documents and Retrieve Documents
HL7 Fast Healthcare Interoperability Specifications (FHIR) DSTU2 or later for data element query
HL7 Fast Healthcare Interoperability Specifications (FHIR) DSTU2 or later for document query
Other (please list):      
Don’t know

29c. What type(s) of query do you place to HIEs or private enterprise networks outside your HIE? Select all that apply:

Directed to one entity: a query to a single system known or believed to be the source of the information

Directed to many entities: a single query to multiple, named systems that may have information that is returned as multiple documents or single, consolidated document

Broadcast: a query to all or a geographic subset of systems where the source of information is unknown, returning multiple documents or single, consolidated document

Other (please list):      

Don’t know

NA—do not place queries

29d. What type(s) of responses do you return when you receive external queries from HIEs or private enterprise networks outside your HIE? Select all that apply:

Existing documents: respond with documents created by other systems such as EHRs and stored or accessible by the HIE

Dynamic documents: respond with a document produced upon demand from a community health record or other repository of clinical data

Other (please list):      

NA—do not return queries

Don’t know

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