2027 Health Information Organization (HIO) Survey

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2027 Health Information Organization (HIO) Survey

The nationwide survey of HIOs is being led by Civitas in collaboration with 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). We request your time to complete our survey. Participation is completely voluntary and will contribute to a research study. Thank you in advance for your time.
 
The survey includes questions in five broad areas:
    (1) Organizational Demographics
    (2) Network-to-Network Connectivity and TEFCA
    (3) Information Blocking
    (4) Implementation/Use of Standards
    (5) Public Health
 
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. Please see below for more details on data access and data reporting.

Data Access: Who Will Have Access to Individual, Identified Survey Responses
The UCSF research team collecting the data will have access to fully identified survey responses.  In addition, the Office of the National Coordinator for Health IT (ONC) that is funding the survey will be given a dataset containing identifiable survey responses in the first five sections only. ONC may choose to share all or part of the dataset with ASTP/ONC contractors only for the purpose of conducting contracted work and abiding by the same reporting/disclosure terms as described below. 
 
Data Reporting: What Data & Derivative Results Will be Reported in Journals, Data Briefs, or Public Documents
No individual respondents or responses will ever be identified or reported.  All data will be reported at an aggregate level (e.g., across all survey responses).  For example, we may report that 10% of HIOs in the US have payers as participants.  A subset of data may be reported at the regional level (i.e., aggregated by state or healthcare market/HRR). UCSF, ONC, and any ONC contractors receiving the data will abide by these terms.

If you serve as overarching infrastructure for sub-exchanges or otherwise manage multiple distinct health information exchanges, 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 exchange. 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.) 
 
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).

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 0955-0019. The time required to complete this information collection is estimated to average 45 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review 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


















Screening Questions

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

1. As of today is your organization: (select one)

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

 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 different tax identification numbers; HIE between independent entities requires that at least one entity is independent of the other(s).



























Organizational Demographics


    1. Since March 1, 2025, have you merged or are you planning to merge with another HIO?
 No, not planning to do so
 Currently considering
 Yes, plan to merge. If public, with whom:      
 Yes, recently merged. If public, with whom:      

    2. Which of the following general categories apply to your organization: (Select all that apply)
 Multi-state HIO
 Single, statewide HIO
 Community or local HIO
 Governmental, state-designated HIO
 Non-governmental, state-designated HIO
 Enterprise HIO (i.e. primarily facilitate exchange between strategically aligned organizations)
 Health Information Service Provider (HISP)
 Other (please list):      

    3. What is your legal organizational structure?
 State Government/Agency
 Private Non-Profit 501c3
 Private For-Profit
 Other (please specify):      

    4. *Which state(s) or province(s) do you consider the primary ones in which you currently have, or are recruiting new, participants in your HIO? This should *not* include state(s) that you connect to via regional/national networks, such as Patient Centered Data Home or eHealth Exchange, or state(s) in which you provide technology for other HIOs that are branded under a different name.
 Alabama		 Alaska		 American Samoa	 Arizona
 Arkansas		 California		 Colorado		 Connecticut	
 Delaware		 Distr. of Columbia	 Florida		 Georgia	
 Guam		 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	 N. Mariana Islands 	 Ohio 		 Oklahoma	
 Oregon		 Pennsylvania	 Puerto Rico		 Rhode Island
 South Carolina	 South Dakota	 Tennessee 		 Texas	
 Utah			 US Virgin Islands	 Vermont		 Virginia	
 Washington		 West Virginia	 Wisconsin		 Wyoming

    5. (Display for the state(s) selected in Organizational Demographics, Question 4). Please select the specific hospital service area(s) † in which you currently have, or are recruiting new, participants in your HIO.

† 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] 
	     
	A hospital service area look-up by zip code can be found at: www.dartmouthatlas.org/data/search_zip.php

If you describe your service area differently or have additional comments on geographic area covered, please comment:      

5a. If you have participants in other states or connections to HIOs in other states, please list those states here:       

    6. Please indicate which of the following options applies to your HIO data architecture model:
 Federated
 Centralized
 Both (Hybrid)
 Other (please specify)      

    7. Which of the following do you currently have as core infrastructure or offer as services to your participants (either directly or via a third party)? (Select all that apply)
GENERAL SERVICES

Provider Directory

Patient Consent Management

Community Medical/Health Record: Aggregation of Information from Across the Community Served by the HIO

Patient Electronic Access to their Health Information (e.g., Immunization History, Lab Results)/Support for Individual Access Requests

Record Locator Service

Query-based Exchange 

Results delivery (i.e., uni-directional push) 

Alerting/Event Notification (e.g., Admit-Discharge-Transfer)

Messaging Using the Direct Protocol

Transform Other Document Types or Repositories into CCDAs (e.g., MDS, OASIS, Community Health Record)

Data Normalization 

Intake, Assessment, and Screening Tools

Exchange of Data on Individual Patients' Health Related Social Needs (Often Referred to as Social Determinants of Health) Such as Transportation, Housing, Food Insecurity or Other

Connection to Prescription Drug Monitoring Program (PDMP) (Send or Receive)

Connection to Immunization Information System(s) (IIS) (Send or Receive)

Prescription Fill Status and/or Medication Fill History

Provide Data to Third Party Disease Registries (e.g., Wellcentive, Crimson, ACOs)

Advanced Care Planning (e.g., POLST/MOLST, Power of Attorney, Patient Personal Advance Care Plan)

Sell De-identified Data to Third Parties

Integrating Claims Data

Secure Authentication (e.g. IAL2, OAuth, some other mechanism)

Other (please list):      


Services related to VALUE-BASED PAYMENT MODELS

Activities Related to Quality Measurement (e.g., Generating, Validating, Reporting, Quality Measures.)

Closed-loop Referrals Tracking

Connection to Social Service Referral Platform(s) (e.g., FindHelp Unite Us, Homegrown)

Identification of Gaps in Care

Care Coordination Platform

Registry Services, Including Operating as a Clinical Data Registry or Qualified Clinical Data Registry (QCDR)1

Providing Data to Allow Analysis by Networks/Providers

Analytics (e.g., Risk Stratification, Patient to Provider Attribution)

Other (please list):      

	

7a. (Display selected services if in Organizational Demographics - Question 7 any service is selected). Of the following services you currently have as core infrastructure or offer to your participant, please indicate the frequency of use by participants:

GENERAL SERVICES
None/Minimal use
Moderate use
Routine use
Provider Directory



Patient Consent Management



Community Medical/Health Record: Aggregation of information from across the community served by the HIO



Patient Electronic Access to their Health Information (e.g., immunization history, lab results); Individual Access Services (IAS)



Record Locator Service



Query-based Exchange 



Results Delivery (i.e., Uni-directional Push) 



Alerting/Event Notification (e.g., Admit-Discharge-Transfer)



Messaging Using the Direct Protocol



Transform Other Document Types or Repositories into CCDAs (e.g., MDS, OASIS, Community Health Record)



Data Normalization 



Intake, Assessment, and Screening Tools



Exchange of Data on Individual Patients' Health Related Social Needs (Often Referred to as Social Determinants of Health) such as Transportation, Housing, Food Insecurity or Other



Connection to Prescription Drug Monitoring Program (PDMP) (Send or Receive)



Connection to Immunization Information System(s) (IIS) (Send or Receive)



Prescription Fill Status and/or Medication Fill History



Provide Data to Third Party Disease Registries (e.g., Wellcentive, Crimson, ACOs)



Advanced Care Planning (e.g., POLST/MOLST, Power of Attorney, Patient Personal Advance Care Plan)



Sell De-identified Data to Third Parties



Integrating Claims Data



Secure Authentication (e.g. IAL2, OAuth, some other mechanism)



Other (please list):      




Services related to VALUE-BASED PAYMENT MODELS
None/Minimal use
Moderate Use
Routine use
Activities Related to Quality Measurement (e.g., Generating, Validating, Reporting, Quality Measures)



Closed-loop Referrals Tracking



Connection to Social Service Referral Platform(s) (e.g., FindHelp Unite Us, Homegrown)



Identification of Gaps in Care



Care Coordination Platform



Registry Services, Including Operating as a Clinical Data Registry or Qualified Clinical Data Registry (QCDR)2



Providing Data to Allow Analysis by Networks/Providers



Analytics (e.g., Risk Stratification, Patient to Provider Attribution)



Other, please specify:      





7b. (Display if in Organizational Demographics - Question 7 “Community Medical/Health Record” is selected). Does your Community Medical/Health Record contain:
 Only health information (e.g., diagnoses, procedures, medications)
 Health AND non-health information (e.g., transportation, education, and/or housing data)

7c. (Display if in Organizational Demographics - Question 7 “Alerting/event notification” is selected). Who is notified by the alerting/event notification? 
   Health care provider
	 Health plans
	 ACOs
	 Other, please specify: 

Individual Access Requests
The following questions ask about how your HIO supports individual requests for access to health information, including requests submitted directly by individuals or their personal representatives.

7d-7j: Display if in Organizational Demographics - Question 7a: “Patient Electronic Access to their Health Information” minimal use, moderate use or routine use options are selected)

7d. For individual access requests fulfilled in the past 12 months, what was your organization’s typical fulfillment timeframe?
 Same day
 Within a week
 Two-four weeks
 More than four weeks
 Requests were not fulfilled in the past 12 months
 Don’t know

7e. Which modalities does your organization support for individual access requests? Select all that apply.
Patient portal or other web-based access tool
API-based access
TEFCA Individual Access Services
Manual release of information 
Other, please specify:      
None of the above (exclusive answer option)
Don’t know

7f. (Display if in Organizational Demographics - Question 7e “Patient portal or other web-based access tool”, “API-based access”, or “TEFCA Individual Access Services” is selected).
For each of the following  modalities, does your organization enable patient access without login credentials?


Yes
No
Don’t know
Not Applicable: /Do not provide this modality 
Patient portal or other web-based access tool




API-based access




TEFCA Individual Access Services





7g. Does your organization charge fees to patients for fulfilling individual access requests?
Yes
 No
Not applicable
Don’t know

7h. In the past 12 months, approximately what percentage of individual access requests were denied in whole or in part?
 0%
 1–10%
 10–20%
 More than 20%
 No individual access requests received
 Don’t know

7i. For individual access requests denied in whole or in part in the past 12 months, what were the reasons for denial? Select all that apply.
 Unable to verify the identity or authority of the requester
 Requested information was not available/maintained by our HIO
 Privacy or security concern
 Request was incomplete or unclear
 Request sought information outside the scope of individual access
 Technical limitations
 Legal or policy restriction
 Other, please specify:      
 No requests were denied (exclusive answer option)
 Don’t know

7j. For purposes of responding to individual access requests, how does your HIO characterize its HIPAA status?
 Covered entity
 Business associate
 Neither a covered entity nor a business associate
 Other, please specify:      
 Don’t know

    8. How do you receive and track changes to individual patient consent status? (Select all that apply)
 Faxed signed document 
 Indicator in clinical data feeds 
 Patients interact directly with an online tool
 Not applicable
 Don’t know
 Other, please specify:

    9. Does your HIO have the capability to receive and track patient preferences related to exchanging their health data, including segmenting or keeping separate certain health data they may not wish to exchange (e.g., consider sensitive)?
 Yes
 No
 Don’t know

    10. Does your HIO have the technical capability to electronically segment or keep separate certain types of potentially sensitive health data so that it is not electronically exchanged?
 Yes
 No
 Don’t know

    11. Do entities participating in your HIO cover 100% of your operating expenses?
Yes
No

    12. What is your level of confidence that your HIO will be financially viable over the next 3 years?
Very confident
Somewhat confident
Neither confident nor unconfident
Somewhat unconfident
Very unconfident
Don’t know

    13. Did your HIO receive or will your HIO receive funding from the CMS Rural Health Transformation grant?
 Yes, we have received funding
 Yes, we will be receiving funding in the future
 No, we have not received funding and don’t anticipate receiving funding
 Don’t know if we will be receiving funding in the future

    14. If any of the yes options above: For what purpose will you be using the funds?
 Onboarding new members, briefly describe:     
 Providing new services, briefly describe:     
 Other, please describe:_     


    15. If you have a Master Patient Index (MPI), please ESTIMATE:
Total number of unique (resolved) individuals in your MPI:	           Do not know
Total number of unique individuals in your MPI with more than only demographic data:           Do not know

    16. Within the past year, please estimate the number of acute care hospitals (individual facilities both within health systems and independent, including VA, public, and private) that are directly connected (not via another network) to your HIO:

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

    17. Please report whether each type of stakeholder is involved in your HIO in the following ways:
Answer Options 
Provides Data
Views or Receives Data
Pays to Participate in HIE
Stakeholder Not Involved in Your HIO
(exclusive answer option)
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) 
 



Other (please specify):       
 



AMBULATORY SETTINGS 
 
 
 
 
Community Health Center or Federally Qualified Health Center 
 



Independent Physician Practice or Practice Groups (e.g., specialty clinics, IPAs)  
 



Hospital-Owned or Health System-Owned Physician Practice 
 



Behavioral Health Provider (e.g., community mental health, SUD/OUD) 
 



Other (please specify):       
 



OTHER STAKEHOLDERS 
 
 
 
 
Community Based Organizations (CBOs)  
 



Emergency Medical Service 
 



Employer/Purchaser 
 



Home Health Agencies 
 



Independent Radiology/Imaging Center 
 



Life Insurance Company 
 



Native American/Alaska Native Tribal Entities 
 



Patients/Consumers 
 



Pharmacy 
 



Private Payer (e.g., Blue Cross, Medicaid plan) 
 



State Medicaid Agency 
 



State, Tribal, Local, or Territorial Public Health Agency (PHA) 
 



Social Service Agency (e.g., Housing, Transportation, Food, Financial Services) 
 



FEMA or Other Disaster Relief Organization 
 



Other Federal Agency (e.g., DOD) 
 



Other State or Local Government Agency




Other (please specify):       
      
     
     
     
    18. Does one or more of the following type of laboratory provide test results to your HIO? Connected means at least one connection.
Answer Options
Connected to our HIO and provide test result
Connected to our HIO but do not provide test results 

Not connected to our HIO

Don’t know

Hospital-based Labs




Physician Office-based Labs




Commercial Labs




Other Independent Labs (NOT Including Commercial)




Mobile labs (e.g., Point of Care Labs for COVID-19)




Public Health Labs




Other, please specify:               
     
     
     
     


Artificial Intelligence

    19. Does your HIO: (Select all that apply)
 Provide health data to third parties (e.g., companies, researchers) to be used for developing/training AI models
 Use health data to develop your own AI models to commercialize
 Use health data to develop your own AI models and deploy for participants (individually or collectively)
 Deploy AI tools developed by third parties on behalf of participants (individually or collectively
 Deploy AI tools to achieve internal operational efficiencies (e.g. reduce the cost of operation)
Other, please specify:      
None of the above (exclusive answer option)

    20. (Display if in Organizational Demographics - Question 19: “Use health data to develop your own AI models to commercialize” or “Use health data to develop your own AI models and deploy for participants” or “Deploy AI models developed by third parties on behalf of participants” or “Deploy AI to achieve internal operational efficiencies” is selected).

  What types of models have you deployed: 

 
Yes
No
Don’t know
1. Non-Machine Learning Predictive Models (e.g., LACE+ Readmission model based on logistic regression)



2. Machine Learning Models (e.g. Readmission model leveraging random forest or neural network)



3. Generative AI Models/Large Language Models (e.g., to create text summaries)



Other, please specify:      



None of the above (exclusive answer option)




20a. (Display if in Organization Demographics – Question 20 any “Yes” is selected). For which specific use cases have you deployed AI tools? (Select all that apply)

 Predict health trajectories or risks for inpatients (e.g., early detection of onset of a disease or condition like sepsis; predicting in-hospital fall risk)
 Identify high risk outpatients to inform follow-up care (e.g., readmission risk)
 Monitor health (e.g., through integration with wearables)
 Assist diagnosis or recommend treatments (e.g., identify similar patients and their outcomes)
 Generation of chart summaries
 Patient-facing health recommendations and self-care engagement
 Prediction of quality gaps
 Operational process optimization (e.g., supply management). Please specify:      
 Other, please specify:      
 None of the above (exclusive answer option)
 Don’t know (exclusive answer option)

20b. (Display if in Organization Demographics – Question 20 any “Yes” is selected). Were any state policies (e.g., legislation, regulations) or organizational policies (e.g., participant agreements) created and/or adjusted to allow development or use of AI models? 
Yes 
No 
Don’t Know

20c. (Display if in Organization Demographics – Question 20 any “Yes” is selected). What types of participants are asking for/interested in AI models? (e.g., health systems; independent practices)      

20d. (Display if in Organization Demographics – Question 20 any “Yes” is selected). What is your approach to governance of AI models – assessing models for bias, assessing model drift over time, etc.?      






















Network-to-Network Connectivity and TEFCA									
                    
    1. Does your HIO: (Select all that apply)	


Sell/provide your infrastructure to other HIOs

Buy/use infrastructure from another HIO 

Connect to other HIOs in the SAME state

Connect to other HIOs in a DIFFERENT state(s)

None of the above (exclusive answer option)


    2. Is your HIO participating in the Trusted Exchange Framework and Common Agreement (TEFCA)? 
Participation refers to having a signed common agreement or terms of participation in place. 
 Yes
 No, but we plan to participate as a QHIN
 No, but we plan to participate as a participant or sub-participant
 No, and we do not plan to participate
 No, and we don’t know if we will participate

2a. (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “No, but we plan to participate as a QHIN” OR “No, but we plan to participate as a participant or sub-participant” OR “No, and we do not plan to participate” OR “No, and we don’t know if we will participate” is selected). 
Please select the top 3 reasons for why you are not currently participating, unsure about participating, or not planning to participate in TEFCA? (Select all that apply)
 Not enough information (please briefly describe why/what information is missing):                 
 Lack time/resources to prepare
 Concerns about privacy and/or security of the network
 Concerns about risk of inappropriate use of the data
 Concerns about potential conflicts regarding privacy policy with state law regulations or other agreements
      Concerns about participant/sub-participant lack of compliance with terms of participation
 Concerns about lack of QHIN compliance with Common Agreement (e.g., vetting participants)
 Lack of input into TEFCA-related processes
 Burden related to legal agreements and/or policies
 Reporting burden
      Changes required to meet technical requirements, such as standards required to participate in TEFCA
      Concerns about the volume of queries we would receive through TEFCA
      Concerns about resolving potential receipt of duplicate data
 Do not perceive sufficient value in participating (please briefly describe why):       
 Lessens competitive advantage (please briefly describe why):
 Waiting to see if and how requirements for exchange and participation change (e.g., requirements related to FHIR based transactions) (please briefly describe):       
 Not yet developed a strategic plan to participate      
 Other issue not listed above (please list):       

2b. (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes” OR “No, but we plan to participate as a participant or sub-participant” OR “No, but we plan to participate as a QHIN” is selected). Which TEFCA QHIN(s) or Candidate QHIN(s) are you participating in or planning to participate in? (Select all that apply)


CommonWell Health Alliance

Epic Nexus

eClinicalWorks

eHealth Exchange

Health Gorilla

Kno2

KONZA Health

MedAllies

Netsmart

Oracle Health

Surescripts

Other (please list):      

Don’t Know (exclusive answer option)


2c. (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes” OR “No, but we plan to participate as a participant or sub-participant” OR “No, but we plan to participate as a QHIN” is selected).  Is your HIO currently using the following national networks / frameworks to exchange data? 

Live Data Exchange (send, query, or receive)
Carequality

CommonWell Health Alliance

DirectTrust

e-Health Exchange

Health Gorilla

Kno2

MedAllies

Patient Centered Data Home (Governance Council supported by Civitas)

Other (please list):      

None of the above

Don’t know (exclusive answer option)


2d. (Display if in Network-to-Network Connectivity and TEFCA, Question 3: “Yes” OR “No, but we plan to participate as a QHIN” OR “No, but we plan to participate as a participant or sub-participant” is selected). What changes has your HIO made, or is your HIO planning to make, to its operations in order to participate in TEFCA:

Yes
No 
Don’t know
Not Applicable
Changing types of services offered




Selling/providing your services to other HIOs




Buying/using services from another HIO 




Changing technical infrastructure




Changing legal agreements and/or policies




Changing other infrastructure (e.g., creating new training, supporting or making process redesigns (e.g., new workflows)) 




New partnerships with other HIOs 




New partnerships with an entity that is not an HIO (e.g., health IT developer)




Other (please list):      





2e. (Display if in Network-to-Network Connectivity and TEFCA, Question 2c: “Live Data Exchange” is NOT selected for CommonWell Health Alliance AND DirectTrust AND Patient Centered Data Home AND e-Health Exchange AND Carequality) OR “None of the above” is selected. Please select reason(s) for not using any of the national networks / frameworks networks: (Select all that apply)

 Do not see the value in what they provide (i.e., services not useful or data limited)
 Perceive them as competitors
 Participation costs too high
 Not a priority
 Other. Please list:      

2f. (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes” is selected). How often has your HIO queried data through TEFCA within the past six months?
 Often/Routinely
 Sometimes
 Rarely 
 Never
 Don’t know 
 
2g (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes” is selected AND if 2i is “Often/Routinely,” “Sometimes”, or “Rarely” response). For which use cases has your HIO made queries through TEFCA within the past six months? Select all that apply
 Treatment
 Individual access services
 Public health reporting
 Payment
 Government benefits determination
 Health care operations
 Other, please list:      
 Don’t know

2h. Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes” is selected AND if 2f is “Often/Routinely,” “Sometimes”, or “Rarely” response). 
How would you rate the benefit of participating in TEFCA to your HIO and participants:
 Substantial (please explain):     
 Moderate (please explain):     
 Minimal/Not at all (please explain):       
 Don’t know 

2i. (Display if in 2f: “Substantial” or “Moderate” is selected). What types of benefits are you experiencing with TEFCA participation:
	 Connection to other types of organizations
      Easier to obtain patient health data that are located within other networks
Easier to share patient health data with other networks
Higher quality and/or more consistently formatted data
Volume of available data from other exchange partners
Reduced friction and/or administrative burden
Other (please list):     
2j. (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes”) How satisfied are you with your HIO’s QHIN?
		 Very satisfied
		 Satisfied
		 Neither satisfied nor dissatisfied
		 Dissatisfied (please explain):       
		 Very dissatisfied (please explain):       
		 N/A (e.g., we are the QHIN)

2k.  What proportion of your participants currently participate in TEFCA through your HIO?
 All/Most
 Some
 Few (Please explain):       
 None (please explain):        
 Don’t know

2l.  (Display if in Network-to-Network Connectivity and TEFCA, Question 2: “Yes” is selected) Which of the following concerns, if any, has your HIO experienced related to your participation in TEFCA within the past six months?
      Concerns about the privacy and/or security of the network
              Concerns about the risk of inappropriate use of the data
              Concerns about the potential conflicts regarding privacy policy with state law regulations or other  agreements 
      Concerns about the participant/sub-participant lack of compliance with terms of participation
      Concerns about the QHIN compliance with Common Agreement (e.g., vetting participants)
                        Lack of input into TEFCA-related processes 
 Burden associated with ongoing updates to legal agreements
 Ongoing reporting burden 
	 Ongoing burden associated with supporting new technical requirements, such as standards required to participate in TEFCA.
 Addressing volume of queries we receive through TEFCA
 Resolving potential receipt of duplicate data
 No longer perceive sufficient value in (please briefly describe why):        
 Other concerns:__________________
 No concerns


Information Blocking	
Information blocking practices have been defined in rules that went into effect on April 5, 2021. The following set of questions ask about practices that may constitute information blocking based on your understanding of the rules. Please respond based on your experience since the rules went into effect (April 5, 2021). 

    1. To what extent are you familiar with the information blocking rules, applicable actors, exceptions, and enforcement timeline?
 Very Familiar
 Moderately Familiar
 Somewhat Familiar
 Not Familiar

    2. To what extent are you familiar with ONC’s process for reporting violations of the information blocking rules?
 Very Familiar
 Moderately Familiar
 Somewhat Familiar
 Not Familiar

    3. Do you consider yourself a Health Information Network (HIN), as defined in 45 CFR 171.102?
 Yes
 No
 Don’t know

    4. Which of the following actions has your HIO taken related to information blocking? Select all that apply.
Developed or implemented information blocking compliance policies
Developed or implemented processes for documenting information blocking exceptions
Other (please specify) 
None of the above
Don’t know

    5. How often have you encountered each of the following form(s) of information blocking by EHR vendors (and other Developer(s) of Certified Health IT)? 

Rarely/Never
Sometimes
Often/ Routinely
Don’t Know
PRICE

Examples: 

using high fees to avoid granting third-parties access to data stored in the developer’s EHR system 

charging unreasonable fees to export data at a provider’s request (such as when switching developers)





CONTRACT LANGUAGE

Examples: 

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

Examples: 

using artificial technical barriers to avoid granting third-parties access to data stored in the vendor’s EHR system

using artificial reasons to limit the types of information that can be sent/shared or received





REFUSAL

Examples: 

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):      





    6. What proportion of EHR vendors have you encountered engaging in information blocking?
 All/Most
 Some
 Few
 None (skip to 9)
 Don’t know or N/A (Don’t interact with developers) (skip to 9)

6a. Among EHR Vendors that engage in information blocking, how often do they do it?
 Routinely
 Sometimes
 Rarely
 Don’t know

    7. When you have experienced practices that you believed constituted information blocking by EHR vendors in the past year, how often did you report the information blocking to ONC/HHS?
 Always
 Most of the time
 Sometimes
 Rarely
 Never

7a. (Display if in Information Blocking Question 7”: “Rarely” or “Never” is selected). Why have you not reported information blocking by EHR vendors when you have experienced it?      

    8. To what extent does information blocking by EHR vendors make it more difficult for you to provide HIE services to your participants?
 Greatly
 Moderately
 Minimally/Not at all
 Don’t know 

    9. In what form(s) have you experienced information blocking by hospitals and health systems? (Skip destination for those who answered “None” or “Don’t Know or N/A” in Information Blocking Question 6).


Rarely/Never
Sometimes
Often/ Routinely
Don’t Know
ARTIFICIAL TECHNICAL, PROCESS, OR RESOURCE BARRIERS

Examples: 

requiring a written authorization when neither state nor federal law requires it

requiring a patient to repeatedly opt in to exchange for TPO




REFUSAL

Examples: 

refusing to exchange information with competing providers, hospitals, or health systems 

refusing to share data with other entities, such as payers or independent labs




CLOSED NETWORK EXCHANGE

Examples: 

promoting alternative, proprietary approaches to HIE

exchanging only within referral network or with preferred referral partners




OTHER (please list):      





    10. What proportion of hospitals and health systems have you encountered engaging in information blocking?
 All/Most
 Some
 Few
 None (skip to 13)
 Don’t know or N/A (skip to 13)

10a. Among hospitals and health systems that engage in information blocking, how often do they do it?
 Routinely
 Sometimes
 Rarely
 Don’t know

    11. When you have experienced practices that you believed constituted information blocking by hospitals and health systems in the past year, how often did you report the information blocking to ONC/HHS?
 Always
 Most of the time
 Sometimes
 Rarely
 Never

11a. (Display if in Information Blocking, Question 11: “Rarely” or “Never” is selected). Why have you not reported information blocking by hospitals and health systems when you have experienced it?
     

    12. To what extent does information blocking by hospitals and health systems lead to missing patient health information?
 Greatly
 Moderately
 Minimally/Not at all
 Don’t know 

    13. Among other types of entities, to what extent have you observed information blocking behaviors? (Skip destination for those who selected “None” or “Don’t Know or N/A” in Information Blocking, Question 10).

Rarely/Never
Sometimes
Often/ Routinely
Don’t Know
Commercial Payers




Commercial Laboratories




Independent labs (not including commercial)




Commercial Pharmacies




Public Health Agencies
Healthcare Providers other than Hospitals and Health Systems (e.g., independent practices)




National Networks (e.g. CommonWell, eHealth Exchange)




State, Regional, and/or Local Health Information Exchanges




Other, please list:      





    14. (Display if in Information Blocking, Question 13, “Sometimes” or “Often/Routinely” is selected for each entity) How often have you been able to overcome these difficulties to access data from these entities?


Never
Rarely
Sometimes

Often
Always
Commercial Payers
 




Commercial Laboratories
 




Independent labs (not including commercial)
 




Commercial Pharmacies
 




Public Health Agencies
Healthcare Providers other than Hospitals and Health Systems (e.g., independent practices)
 




National Networks (e.g. CommonWell, eHealth Exchange)
 




State, Regional, and/or Local Health Information Exchanges
 




Other (please list):      
 


























Implementation and Use of Standards	
    1. To what extent does your HIO electronically receive data from your participants using the following methods listed below? (Select one option across each row) 
Please consider the methods used by participants to provide the data to your HIO.  Do not include conversions you may do after receipt. With regards to conformance to standards, if the receipt of the data is in partial conformance, please consider that as conformant.  


Routinely/
From most participants
Sometimes/
From some participants
Rarely/
From few participants
Never
Don’t know
Care summaries in a structured format (e.g., CDA, CCR, C32)






Care summaries in an unstructured format (e.g., PDF)





HL7 v2 messages for event notification (ADT messages)





Other HL7 v2 messages (e.g., ORU/ORM, SIU, Scheduling, Orders, Labs)





FHIR (any version)






1a. (Display if in Implementation and Use of Standards, Question 1: “Routinely” OR “Sometimes” is selected for “Care Summaries in a structured format”). Do you parse C-CDAs (i.e., extract and make available discrete data elements): 
 Yes
 No
 Don’t know

    2. To what extent does your HIO electronically send or make available for query data to your participants using the following methods?

Routinely/
To most participants
Sometimes/
To some participants
Rarely/
To few participants
Never
Don’t know
Care summaries in a structured format (e.g., CDA, CCR, C32)





HL7 v2 messages (any type)





FHIR (any version) 






    3. For document-based exchange, what type(s) of responses do you return when you receive queries from your participants? (Select all that apply)

 Original documents: raw document as provided by clinical source (one per event). This includes documents created by other systems such as EHRs and stored or accessible by the HIE 
 Dynamic documents: multi-source documents produced upon demand from a community health record or other repository of clinical data
 Other (please list): 
 Don’t know 

    4. Which of the following standards do you use to query health information from external entities?  (Select all that apply) 


Yes
IHE XDS (Cross-Enterprise Document Sharing)
 
IHE MHD (Mobile Access to Health Documents)
 
IHE XCA (Cross-Community Access)
 
IHE XCDR/XDR

NwHIN Specifications for Query for Documents and Retrieve Documents

HL7 Fast Healthcare Interoperability Specifications (FHIR) DSTU2  for data element query

HL7 Fast Healthcare Interoperability Specifications (FHIR) DSTU2 for document query

FHIR v.4.0  for data element query 
 
FHIR v.4.0  for document query 
 
HL-7 2.x ADT message exchange
 
C-CDA document exchange
 
Other (please list):       
 
Don’t know (exclusive answer option)

None of the above (exclusive answer option)

Not applicable (e.g., do not query-) (exclusive answer option)


    5. Which types of clinical and other health-related information are made available by your HIO to your participants (as part of a clinical document or as a structured data element)? See U.S. Core Data for Interoperability (USCDI) for further information. (Select all that apply)

Included in your HIO
Data Provenance

Health Insurance Information (e.g., coverage status, coverage type, member/subscriber/group/payer identifiers)   

Clinical Information  
Problems

Prescribed Medications

Filled Medications

Medication Allergies

Non-Medication Allergies & Intolerances

Functional Status

Cognitive Status

Vital Signs

Pregnancy Status

Immunizations

Family Health History

Health Concerns

Clinical Notes

Imaging/Pathology
Diagnostic Imaging Order

Radiology Report (narrative)

Pathology Report (narrative)

Laboratory-Related Information

Laboratory Test(s) Ordered

Laboratory Value(s)/Result(s)

Laboratory Reports (narrative)

Team-Based Care
Care Plan Field(s), including Goals and Preferences

Care Team Member(s)
(Provider ID, Provider Name)

Assessment and Plan of Treatment

Encounter-Related Information
Procedures

Admission and Discharge Dates and Locations

Encounters (Encounter type, diagnosis, time)

Discharge Disposition

Referrals

Discharge Instructions

Reason for Hospitalization

Demographic Information

Home Address

Race/Ethnicity

Preferred Language

Health-related Social Needs (e.g., housing, food insecurity) 

Substance Use Disorder (as defined in 42 CFR Part 2)

Other (please list):     


5a. (Display if in Implementation and Use of Standards, Question 5, “Health-related Social Needs” is selected). Which of the following health-related social needs domains does your organization make available to participants? (Select all that apply)
 Housing / Homelessness
 Food Security
 Transportation
 Financial
 Utility Assistance
 Interpersonal Violence
 Employment
 Long Term Services and Supports
 Health Education
 Other. Please specify:      

5b. (Display if in Implementation and Use of Standards, Question 5, “Health-related Social Needs” is selected). How are health-related social needs data encoded? (Select all that apply)
 ICD-10 Z codes
 LOINC
 SNOMED
 Health-related social needs data are not encoded
 Encoded using other standard. Please specify:      


    6. Does your HIO map from non-standard laboratory test/result codes to LOINC® codes?
 Yes
 No 
 Don’t know 

6a.  (Display if in Implementation and Use of Standards, Question 6: “Yes” is selected). Within the past year, based upon the volume of test results received (qualitative and quantitative), to what extent did your HIO have to map those results from non-standard codes to LOINC codes?

 All or most
 Some
 Few
 None 
 Don’t know

    7. Does your HIO currently assess the quality of data you electronically obtain (receive and/or query) from external sources (e.g., participants, stakeholders) using a standardized tools, (e.g., such as one based upon the PIQI framework)?

 Yes
 No, but we plan to do so within the next year
 No, and we do not have plans to do so
 Don’t know 

7a. (Display if in Implementation and Use of Standards Question 7: “Yes” is selected) Please select the purposes for which your organization is using these tools:  
Monitor the extent to which data obtained from participants conforms to standards aligned with U.S. Core 	Data for Interoperability (USCDI)
Monitor completeness/missingness of data obtained from participants
Other: Please describe____________________
Don’t know























Public Health
Is your HIO connected to any state, tribal, local, or territorial public health agencies (PHAs)? (Connected means that the public health entity sends data to your HIO, receives/queries for data, and/or has view only access to data from your HIO.) (Select all that apply.)
	 Yes, state 
 Yes, local 
 Yes, tribal
 Yes, territory and/or freely associated states
	 None of the above (exclusive answer option; if selected skip to Section D question 6 (6, 6a-6d only) within Public Health Block).

SECTION A: Summary of Current Connectivity to PHAs (see list here) 

                            1. Please report how many PHAs are connected to your HIO:
(Connected means that the public health entity sends data to your HIO, receives/queries data, and/or has view only access to data from your HIO)
Note: Any connections to registries or federal and national public health networks are addressed later in this survey. Please do not include them here.


Total number of unique PHAs connected with your HIO in any way
Don’t know
1_1. State-level
(Display if "Yes, state" is selected in Public Health Screening Question)
     

1_2. Local-level 
(Display if "Yes, local" is selected in Public Health Screening Question)
     

1_3. Tribal-level 
(Display if "Yes, tribal" is selected in Public Health Screening Question)
     

1_4. Territorial-level
(Display if "Yes, territory" is selected in Public Health Screening Question)
     


1a. (Display if in Public Health, Section A, Question 1, “Total number of unique PHAs” is greater than 0). Among the total number of unique PHAs, how many engage in bidirectional exchange (both send and receive/query for data from your HIO)? 
 

Number of PHAs with bidirectional exchange (send and receive data with your HIO)
Don’t know
1a_1. State-level
(Display if in Public Health, Section A, Question 1, state-level “Total number of unique PHAs” is greater than 0 Question)
     

1a_2. Local-level 
(Display if in Public Health, Section A, Question 1, Local-level “Total number of unique PHAs” is greater than 0)
     

1a_3. Tribal-level 
(Display if in Public Health, Section A, Question 1, Tribal-level “Total number of unique PHAs” is greater than 0)
     

1a_4. Territorial-level
(Display if in Public Health, Section A, Question 1, Territorial-level “Total number of unique PHAs” is greater than 0)
     



1b. (Display if in Public Health, Section A, Question 1, any answer in the “State-level” row is greater than 0 OR if any answer in the “Local-level” row is greater than 0 OR if any answer in the “Territorial-level” is greater than 0).

Which of the following states/territories are the PHAs connected to your HIO located in? (Select all that apply.)
 Alabama		 Alaska		 American Samoa	 Arizona
 Arkansas		 California		 Colorado		 Connecticut	
 Delaware		 Distr. of Columbia	 Florida		 Georgia	
 Guam		 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	 N. Mariana Islands 	 Ohio 		 Oklahoma	
 Oregon		 Pennsylvania	 Puerto Rico		 Rhode Island
 South Carolina	 South Dakota	 Tennessee 		 Texas	
 Utah			 US Virgin Islands	 Vermont		 Virginia	
 Washington		 West Virginia	 Wisconsin		 Wyoming

2. Is your HIO sending and/or receiving data through the following:

National Public Health Networks
Yes
No
Don’t Know
Association of Public Health Laboratories Informatics Messaging Services (APHL AIMS)



IZ Gateway





SECTION B: Services Provided to Participating Healthcare Providers

3. Do you offer the following reporting services to your participating healthcare providers? 
(Select all that apply)


Yes

No
Don’t know (exclusive answer option)
Syndromic surveillance reporting



Immunization registry reporting



Electronic case reporting



Electronic reportable laboratory result reporting



Public health registry reporting (e.g., cancer registry; administered by or for PHAs for public health purposes)



Clinical data and/or specialized registry reporting (administered by or for non-public health agency entities for clinical care and monitoring health care quality and resource use)





Other reporting (e.g., COVID specific, other registry)



Chronic disease reporting



Bed capacity and resource utilization data



Antimicrobial Use and Resistance (AUR)



National Healthcare Safety Network (NHSN)





3a. (Display if in Public Health, Section B, Question 3: “Yes” is selected for "Public health registry reporting”). What type(s) of public health registry reporting are in production (e.g. cancer, birth defects, and traumatic injuries)?      


SECTION C: Receiving Data from PHAs 
Note: Please respond to the remaining questions for all PHAs, not only the primary

4. Which of the following types of data do you receive from PHAs connected to your HIO? (Select all that apply)
 Immunization 
 Reportability responses (i.e., whether a condition is reportable in a jurisdiction)
 Laboratory orders and/or results from public health lab
 Data from public health registry (administered by or for public health agencies for public health purposes)
 Data from clinical data and/or specialized registry (administered by or for non-public health agency entities for clinical care and monitoring health care quality and resource use)
 Data related to COVID-19 
 Vital records
 Other, please list:      	
 Don’t know (exclusive answer option)
 None—do not receive data from public health entities (exclusive answer option)

SECTION D: Services Provided to PHAs

    5. What services does your HIO provide to PHA(s)?: (Select all that apply)
 Analytic and Data Quality Support 
 Dashboarding and Data Visualization Assistance
 Process Automation
 Use of HIO MPIs to Support Public Health Deduplication or Other Services
 Outbreak Monitoring and Alerting
 Public Health Policy Impact Monitoring
 Situational Awareness
 Make Public Health Data Available to Participants
 Community Coordination and Navigation Services
 Other, please list:      
 None of the above (exclusive answer option)

    6. Does or could your HIO currently provide data to PHA(s) to fill data-related gaps (e.g., missing demographic information)?
Yes
No, but could do so
No, and could not do so
Don’t know

6a. (Display if in Public Health, Section D, Question 6: “Yes” or “No but could do so” is selected). Please indicate what types of data are or could be provided to PHAs to fill data-related gaps in information. (Select all that apply)
	

Currently provided
Not currently provided but could be
Clinical Information  

Problems


Prescribed Medications


Immunizations


Laboratory-Related Information


Laboratory Value(s)/Result(s)


Encounter-Related Information

Procedures


Admission and Discharge Dates and Locations


Encounters (Encounter type, diagnosis, time)


Reason for Hospitalization


Newborn Screenings


Demographic Information


Home Address or other up-to-date contact information for contact tracing


Race/Ethnicity


Preferred Language


Health-related Social Needs (e.g., housing, food insecurity) 


Substance Use Disorder Diagnosis (as defined in 42 CFR Part 2)


Other

Other, please list:     



6b. (Display if in Public Health, Section D, Question 6: “Yes” is selected). How often do PHA(s) electronically receive or query these types of data from your HIO? 
	 Often
	 Sometimes
	 Rarely
	 Never
	 Don’t know

6c. (Display if in Public Health, Section D, Question 6: “Yes” is selected). How are PHA(s) accessing the types of data that you provide? (Select all that apply) 
 Single patient lookup through a portal
 Batch query and response 
 FHIR API query and response
 Aggregate data and/or statistics (e.g., dashboard)
 SFTP/Amazon S3 file transfer
 Other, please list:      
 Not applicable (exclusive answer option)

6d. (Display if in Public Health, Section D, Question 6: “Yes” is selected). To what extent is access to the types of data you provide in real-time?
 Majority in real-time
 Mix of real-time and lagged 
 Majority lagged



SECTION E: Support for and Barriers to Public Health Exchange

    7. Do you receive any of the following funding source(s) to support PHA connectivity? (Select all that apply)
 Fees paid by participants
 Fees paid by state or local health department(s)
 State Medicaid funding
 CDC funding (including through state or local health departments)
 Other federal funding
 Other state funding, including from state health department
 Other, please list:      
 Do not receive any funding to specifically support PHA connectivity (exclusive answer option)

    8. (Display if in Public Health, Section E, Question 7: “Do not receive any funding to specifically support PHA connectivity” is NOT selected). Based upon your best estimate, to what extent do you think these sources of funding will be available to support PHA connectivity over the next 3 years?   
	 To a great extent
 To a moderate extent
	 To some extent
 To a small extent
	 Not at all
	 Don’t know

    9. To what extent have you experienced the following barriers within the last year to PHA connectivity? 

Extensive
Moderate
None/Minimal
N/A
Patient consent model hinders data exchange with PHAs




State statutes/regulations limit PHAs participation with HIO




Need for data use agreements for public health data




Limited funding from PHAs




Limited funding from HIO participants




PHAs lacks staffing




PHAs lacks technical capability to receive messages from your HIO




PHAs lacks technical capability to process messages from your HIO




Other technical limitations on part of PHAs




PHAs have other priorities




Low return on investment to your HIO 




Cost to maintain infrastructure that is only used in specific circumstances (e.g., natural disaster, public health emergency)




PHAs not willing or able to receive public health reporting data




Other, please list:      





    10. To what extent do you feel prepared to support PHA data needs for a future public health emergency?
 To a great extent
 To a moderate extent
 To some extent
 To a small extent		
 Not at all	
 Don’t Know






Additional Information

1. Initiative or Organization Name:      

2. We appreciate your participation. Would you like to receive a copy of our results that will enable you to compare your effort to others in the nation?  

 Yes 
 No


3. If you would like to receive a $50 amazon.com gift certificate, please complete the following fields:

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