Health information exchanges (HIEs) are widespread across the country, with most experts touting them as central to healthcare’s mission for health data interoperability and integration.
Almost four in five hospitals participated in an HIE network in 2018, according to a Medical Care study, and with the COVID-19 public health crisis and need for streamlined data exchange, that number is likely higher now.
As the role of HIEs continues to grow for state public health infrastructure, some HIEs are shifting their model to that of a health data utility (HDU).
What Are HIEs?
HIEs allow providers to share patient medical information through a secure exchange network that is EHR-agnostic, meaning that healthcare providers can share information from different EHR systems.
Most state and regional HIEs were established in response to the 2009 HITECH Act, which allocated over $500 million in funds to 56 territories and states to create "critical health technology infrastructures" to modernize the healthcare ecosystem. These networks are often not-for-profits that work with local stakeholder organizations to form governance and technology frameworks.
National HIEs leverage a "network of networks" approach. For example, the eHealth Exchange network connects to 61 regional or state HIEs and includes the largest public healthcare programs in the country, including the VA health system.
HIEs support care coordination by providing clinicians with up-to-date patient health data, which can prevent excess hospital admissions and readmissions. Healthcare organizations can leverage HIE data on a population health level to identify gaps in care to improve care quality. Additionally, HIEs can provide organizations with data for public health outreach.
What Are HDUs?
Health data utilities (HDUs) are statewide entities that combine, enhance, and exchange electronic health data for treatment, care coordination, quality improvement, and public and community health purposes, according to Civitas Networks for Health.
HDUs emphasize multistakeholder organizational and data governance and are usually designated non-profit organizations or independent state agencies. HDUs leverage existing infrastructure for clinical data exchange, such as regional and statewide HIEs.
According to Civitas, the necessary conditions for HDUs are:
- State policy levers, including incentives and/or mandates
- Broad stakeholder participation, connectivity, exchange, and community-level engagement
- Mature Medicaid and public health use cases
- Multistakeholder corporate and data/network governance
- High standards for data privacy and security
The Public Health Benefits of Casting HIEs as HDUs
Reshaping the nation's HIE networks as state-designated health data utilities offers distinct advantages for public health, according to a 2020 HIMSS article written by David Horrocks, former president of CRISP, the state-designated HIE for Maryland, and John Kansky, president of Indiana Health Information Exchange (IHIE).
"As not-for-profits governed by stakeholders and regulated by states or public-private commissions, HIEs are trustworthy, neutral entities and experienced at managing health data and protecting privacy and have long lived under strict rules, carefully developed by the community, for the use of patient data," Horrocks and Kansky wrote.
They emphasized that a not-for-profit HIE is a good vehicle for deploying public investments, as it is nimbler than a government agency yet responsive to public health leaders' policy choices and priorities.
HIEs are also closely tied to states, the key governmental body for managing public health.
"As in other industries that serve a public good, there can be regulated and unregulated parts of the ecosystem," Horrocks and Kansky said. "HIE networks should function like electric utilities, creating regulated connectivity across which the exchanges and private enterprise will innovate and thrive in free market competition."
"The responsibility for basic connectivity should be given to a not-for-profit organization designated by the state to operate a regulated network over which everyone can transmit information, while generation of useful insights and innovative services should be competitive," they wrote.
Corporate boards comprised of community stakeholders would govern the not-for-profit HIE organization, and the state or public-private regulatory commissions would regulate the HIE, Horrocks and Kansky said.
"Medicare/Medicaid conditions-of-participation and expanded state-mandated reporting are policy levers that should be used to ensure health information exchange connectivity and data collection are sufficiently complete to meet the needs of public health, with appropriate patient privacy protections as approved by the regulatory body," they noted.
Horrocks and Kansky said that while some HIEs have been successful without state designation, many have not, leading to fragmented data.
"Designation of a specific organization by the state creates clarity, eliminates fragmentations, and enhances the ability to work with public health leaders," they wrote. "To operate in concert with public health authorities, the service geography of designated exchanges should generally be state boundaries."
Maryland State Legislature passed a bill in October 2022 that authorizes the state-designated HIE, CRISP, to operate as an HDU.
State law requires CRISP to provide data in real-time to individuals and organizations involved in treating patients and public health officials to support public health goals. The legislation also requires the Maryland Department of Health (MDH), nursing homes, electronic health networks, and prescription drug dispensers to share data with the HDU.
"This designation to operate as a health data utility will amplify the invaluable outcomes sharing health data can have on state public health goals and improving clinical care coordination all while reducing the total cost of care for the state and securing data at the personal level," Craig Behm, president and CEO of CRISP, noted in a public statement at the time of the announcement.
"For treating clinicians and public health authorities, time is of the essence for early intervention to prevent advanced disease, and this new designation will greatly increase health outcomes for our communities," he continued.
CRISP's operation as an HDU is set to improve some of the state's leading public health priorities, such as early intervention services for vulnerable populations and prescription drug monitoring.
"We have a robust infrastructure along with years of specialization in collecting secure and sensitive health care information and delivering it in real-time to providers," Behm said. "We're excited to leverage our HIE to enhance the interoperability of health information throughout the state."
Federal Funding Needed to Support HDUs
Despite HIEs' successes as HDUs in states across the country, there is a lack of long-term financial support, according to a post written by Morgan Honea, EVP of Contexture and president of The Consortium of State and Regional Interoperability (CSRI). CSRI comprises six major HIEs, each following an "aspirational model" of an HDU in their respective regions.
First, Honea noted that the funding models need to change. HDUs should receive ongoing, sustainable funding through the existing public health infrastructure and Medicaid programs. Joint public health-health data utility funding opportunities could encourage these partnerships.
Additionally, the role of government is incredibly important as HIEs advocate for the health data utility model in terms of public health data governance.
"More specifically, the federal government has a pivotal role to play in driving interoperability standards for public health and healthcare IT systems to ensure that we aren't simply rebuilding the current system with new investments," Honea wrote.
"In our work as health data utilities, our organizations have a powerful impact on the communities we serve," he continued. "Essential to our success is support from all levels of government, including long-term resources to support these relationships and activities."