At the Civitas Networks for Health annual conference last week, it was clear that the Health Data Utility framework had emerged as the trending topic in the interoperability community.
HDUs are a data sharing model similar in some ways to Health Information Exchanges (HIEs). Each can play a vital role in the modern healthcare data ecosystem – however, they serve distinct roles.
HIEs are organizations that facilitate access to health-related information at a state or regional level. They serve as a resource for healthcare providers and other community exchange participants, offering a longitudinal view of the data collected about a patient. This may include everything from medical records and lab results to social determinants of health data. A primary goal for HIEs is to collect as much data as possible about individuals in a community and ensure that data is stored in a standardized and accessible manner, allowing for efficient retrieval and utilization.
The HDUs model takes HIEs to another level with:
- Neutrality and flexibility in meeting stakeholders’ goals
- Cooperative state and local leadership and broad governance
- Inclusive governance strategy
- Sustainable funding
- Modular infrastructure and advanced technical services
Both HIEs and the emerging HDUs are pivotal, and I support them wholeheartedly. But they are not a replacement for a nationwide framework of exchange providing a common floor of interoperability for all. We need the ability to access and exchange health data nationwide as supported by the Trusted Exchange Framework and Common Agreement (TEFCA).
If we knew how to solve the problem of siloed health data at the local level or through industry initiatives, we would have done it. People have been working hard for decades to make interoperability work. But Congress realized it wasn’t working and passed the 21st Century Cures Act, which called for the establishment of TEFCA and related data exchange initiatives.
It’s Not an Either/Or Proposition
At the Civitas conference last week, there seemed to be a lot of apprehension on the part of HIEs about TEFCA exchange and the prospect of connecting to a QHIN. Some HIEs are taking a wait-and-see approach, and that’s fair. But I reject the idea that it’s going to be one or the other – regional or nationwide exchange, HDUs/HIEs or TEFCA. With robust local and regional exchange connected to a nationwide interoperability framework, we have a chance to achieve the sort of seamless and comprehensive health information exchange that we have all been working towards.
TEFCA has been referred to as a single on-ramp to a superhighway of nationwide interoperability. I like the metaphor of the interstate highway system. It works. You can start at your farm on a dirt road and make it to gravel, onto local roads, county byways, state highways and onto the interstate. The interstate highway system is TEFCA, which will support but can’t replace last-mile connectivity, community awareness, and participant engagement.
TEFCA is governed by the Office of the National Coordinator for Health IT (ONC) within the federal Department of Health and Human Services (HHS), and will facilitate public health use cases. It has been created with a focus on supporting health equity and will go a long way towards leveling the playing field, particularly in rural areas and regions that may not have robust local connectivity. It will narrow a lot of gaps in the access, exchange and use of health information, providing opportunities to reduce disparities in outcomes for historically disadvantaged groups of people.
Health equity is something that is being addressed creatively at the grassroots level. This nationwide effort can build on and leverage local efforts to be so much more effective. National and local programs should learn from each other, identify best practices, and figure out how to scale successful approaches nationally – building them into the nationwide framework of exchange, and the associated standards and requirements, so that everybody benefits from the work that people do at the local level.
I’m afraid that there is some confusion and even dissention among the interoperability community, and I hope this fizzles out instead of spreading. I think we can all push in the same direction, focusing on delivering privacy protected health data exchange to support better public health, clinical outcomes, and more equitable care. By working together, we can all win.