Survey: 24% of HIOs Not Sure If They Will Participate in TEFCA

In a 2025 survey of health information organizations, only 22% are already participating in the national Trusted Exchange Framework and Common Agreement (TEFCA), and 24 percent continue to say they aren’t sure if they will participate.

These were among the findings discussed during a recent Civitas Networks for Health webinar that examined data from the 2025 National Survey of Health Information Exchange Organizations.

The annual survey was conducted by UCSF with support from the Assistant Secretary for Technology Policy (ASTP) in partnership with Civitas. The survey includes questions from past HIO surveys related to participants, services, challenges, financial viability as well as new topics such as TEFCA, standards and information blocking. Seventy-seven organizations responded. 
 
Julia Adler-Milstein, Ph.D., professor of medicine at UCSF, led participants through the survey findings, joined by David Kendrick, M.D., M.P.H., who serves as a strategic advisor to Civitas Networks for Health. He is the chair of medical informatics at the University of Oklahoma School of Community Medicine and assistant provosts for strategic planning at the OU Health Sciences Center. 

“Twenty four percent is still a high number to say that they aren't sure, so that's a trend that we're going to continue to follow to see if that number decreases,” Adler-Milstein said. 

The survey also asked through which QHIN they are participating, and eHealth Exchange is dominant there. “We asked what changes has your HIO made or planning to make in order to participate in TEFCA. What do you need to do to participate? Forty-seven percent said that they had to do work with their legal agreements or policies, and 35% said they have technical infrastructure work to do, while 24% said they have other infrastructure work,” she said. “Twenty percent made changes to the types of services offered. This gives us a sense of the investment that HIOs are facing as they're trying to make decisions. That's on the cost side of the equation.”

The survey  also asked what proportion of HIO members are participating in TEFCA through the HIO. “It’s one thing for the HIO to say, yes, we're participating, but if they're not bringing along the majority of their participants, that's obviously going to impair the value of TEFCA participation,” Adler-Milstein said. “At this point, 56% say that only a few of their members are participating. Only a minority say that all or most are participating." This is only data from the 16 HIOs that are already participating. “This could just be early data before there's really had time for all of their HIO members to to be able to join. This will be a really important one to track over time,” she said. 

Of those that have had some engagement with a QHIN, 13% say they're very satisfied, 21% say satisfied, and 31% are sort of neutral at this point. When asked about satisfaction with TEFCA issue response, almost half of them say that they haven't reported an issue yet to the to the RCE. So there is limited experience at this point with issue response. 

“We are really curious to see in our next administration of the survey where those numbers are trending, because I think that's really an early snapshot of experiences under TEFCA. I think they are really trying to understand the cost/benefit relationships,” Adler-Milstein said. 

Turning to financial viability, Adler-Milstein said the survey asks HIOs: Does income from participants cover your operating expenses? Using that as a marker, about a third of HIOs report that they are at that marker of financial viability.

Kendrick referred to a Health Affairs article that came out with the headline announcing something like HIEs are dying because there are fewer of them than there were a couple of years before. “We know that was not the through line. The through line was consolidation. The original model was let a thousand flowers bloom and see what survives. The real metric here, I think, would be something like: What percent of Americans are served by a health information organization or what percent of data density is available there? Then with regard to the financial viability, I just want to emphasize this for everybody who looks at that and says, ‘Holy cow, two-thirds of us are going away if we don't fix something.' This is saying 35% of HIOs report they make all of the money needed to sustain themselves entirely from participant fees, no Medicaid dollars, no grant dollars.”

The list of services that HIOs provide gets longer every year because HIOs are finding new use cases. The dominant one that's been at the top of the list across many surveys is alerting and event notifications like ADTs. That's followed by building a community medical or health record through aggregating across multiple sources. Also toward the top of the list is query-based exchange. About two-thirds of HIOs are saying that they're supporting services around the Direct protocol, data normalization, results delivery, transforming other document types or repositories into CDAs. 

The survey also asked about some service offerings that are geared more toward value-based payment models. Three-quarters of HIOs are providing data to allow analysis by a network or provider — a provider profiling and performance use case, followed by activities related to quality measurement, like generating, validating, and reporting out quality measures. Toward the bottom of the list are things like registry services. A quarter of HIOs  say that they are supporting a use case around closed-loop referral tracking.

Adler-Milstein said that one surprising thing in the survey was that two-thirds of HIOs say that they're capturing data on food security, housing, transportation, and then to a lesser extent employment status and interpersonal violence. “This is an area where we're seeing new value add from capturing social needs data,” she added. 

There wasn’t a lot of activity reported around use of FHIR, and Kendrick said he wasn’t surprised. “In fact, I didn't expect many organizations to be receiving FHIR at all. Most hospitals and clinics are just not ready, and even if their vendor claims to be ready, that's not the version that's installed in most places. I was surprised there wasn't more FHIR on the sending data side, meaning exposing a FHIR API. That's probably the core capability of a health data utility technical capability that will have to be achieved in the next round. So that's the one I'll be watching to see if we can grow it.”

Mapping to LOINC codes

The survey asked several questions about LOINC and how much work it is taking for HIOs to map from non-standard laboratory test results to LOINC codes. About a third of HIOs report that they're having to do the mapping work, and 15% say that all or most of their results need that mapping work done. Just about half say that they're having to do that for at least some of the results. “So there is a lot of friction and work still to get to standardized lab data,” Adler-Milstein said. “Many report some challenges with the resources required to do that, to maintain mappings, or a lack of expertise to be able to do that mapping.”

Anecdotally, Kendrick said that even some reference labs are not appropriately using LOINC when sending results in, “and that's just a critical problem that has to get dealt with. There is a need to raise the level of awareness of that at ASTP. The second thing that I would say is this is probably an area that would be great to establish a community of practice among the networks, because we all should approach solving this problem in a similar way. I would think the data coming to us is very similar and coming from the same vendors.”