National Survey Reveals New Insights on Health Information Organizations

Health information exchange organizations (HIOs) are networks that enable the electronic exchange of health information across participating health care providers, public health agencies, payers, and other entities. They also have a unique, wide-angle lens on the state of interoperability nationwide. Since 2020, the Office of the Assistant Secretary for Technology Policy (ASTP) has partnered with the University of California, San Francisco (UCSF) and the Civitas Networks for Health (Civitas) to survey HIOs. We recently published a number of studies from the most recent survey, fielded in 2023, that provide an important view into HIOs' evolution, the role they play in promoting interoperability, and the state of interoperability more broadly.

HIOs' Role in Health Information Exchange

In the 2023 survey, 76 HIOs responded of the 90 operational HIOs that met our inclusion criteria. These 76 HIOs operated across 47 states and just 34% of them reported revenue from HIO participants covering operating expenses-indicating their financial viability without public support or other revenue streams. HIO respondents commonly offered services that include alerting or event notification, community health record or community medical record, and parsing Clinical Document Architecture (CDA) documents. In a study published in Health Affairs, we found that HIOs fulfill a unique role in connectivity: for example, 78% of hospitals reported participating in a regional, local, or state HIO in 2023, and some hospitals only participated in HIOs and no vendor-mediated or national networks. HIO participation in the recently launched Trusted Exchange Framework and Common Agreement™ (TEFCA™) could help broaden its reach. TEFCA is intended to establish a universal governance, policy, and technical floor for nationwide health information exchange. Results from the 2023 survey showed 63% of HIOs planned to participate in TEFCA and 32% of HIOs indicated that they did not know if they would participate. HIOs' planned participation in TEFCA varied by factors such as the number of hospitals participating in the HIO, HIO experience with cross-network exchange, and technical capabilities.

One aspect of HIOs' technical capabilities is their adoption and conformance to standards, which play a critical role in how information is shared among their participants and across networks. Understanding how HIOs use standards can also inform public and private efforts to promote better coordination on standards development, implementation, and conformance. A recently published data brief reports on the variation of standards adoption among HIOs to electronically receive and make data available, and the range of United States Core Data for Interoperability (USCDI) data elements they make available to network members. Our findings indicate that HIOs are likely to make data elements adopted in USCDI available, but HIOs are less likely to make USCDI data elements available as adhered to USCDI's vocabulary standards, and even less likely to receive these data elements from their participants in a standardized manner.

In another study recently published in JMIR Public Health conducted using national survey results, we found that HIOs' established connections to public health agencies (PHAs) and their ability to facilitate health information exchange across entities has the potential to address gaps in the public health data infrastructure uncovered by the COVID-19 pandemic. Specifically, 86% of HIOs that responded across 45 states reported electronic connections to PHAs. Among HIOs connected to PHAs, the most common public health reporting supported by HIOs was immunization registry (64% of HIOs), electronic laboratory result (63%), and syndromic surveillance (61%). We also found that four in five HIOs nationwide make laboratory results available for participating organizations. Further, over half of HIOs connected to PHAs provided data to address COVID-19 information gaps and about two-thirds provided at least one type of data analytic service to PHAs to support COVID-19 pandemic response.

In addition to contributing to the exchange of health information, HIOs also provide a window into the barriers of nationwide exchange. HIOs reported substantially lower levels of potential information blocking practices by health systems and EHR vendors in 2023 than in prior years. Nevertheless, potential information blocking remains common; 30% of HIOs indicated routinely observing EHR developers engaging in potential information blocking. Moreover, a majority (61%) reported that potential information blocking by developers greatly or moderately created difficulty providing services and 45% reported that potential information blocking by health systems created difficulty greatly or moderately resulted in missing data.

Our analysis of the survey showcases that HIOs play an active and important role in nationwide health information exchange, with a diverse set of functionalities and capabilities. However, in addition to HIOs, other key policy advancements are needed to promote health information exchange. For instance, the HTI-2 proposed rule continues ASTP's commitment to advance interoperability and improve information sharing among patients, providers, payers, and public health authorities. ASTP is also monitoring potential information blocking practices and plans to continuously engage the health IT ecosystem to ensure there is an active information sharing environment.

New Survey Fielding Now

We have just started to field a new round of responses for the national HIO survey to continuously track the role HIOs play in health information exchange and key health IT policy areas. If you're a representative of an HIO or HIO executive, you should have received this survey. If not, please reach out to Estelle Martin ([email protected]) to confirm your organization is included. If you're a network member, please encourage your HIO to participate in this year's survey to help ensure accurate survey results that will inform national information exchange policy.