In a 2025 survey of well being data organizations, solely 22% are already collaborating within the nationwide Trusted Trade Framework and Widespread Settlement (TEFCA), and 24 % proceed to say they aren’t positive if they’ll take part.
These have been among the many findings mentioned throughout a latest Civitas Networks for Well being webinar that examined information from the 2025 Nationwide Survey of Well being Data Trade Organizations.
The annual survey was carried out by UCSF with assist from the Assistant Secretary for Know-how Coverage (ASTP) in partnership with Civitas. The survey contains questions from previous HIO surveys associated to contributors, providers, challenges, monetary viability in addition to new matters similar to TEFCA, requirements and data blocking. Seventy-seven organizations responded.
Julia Adler-Milstein, Ph.D., professor of drugs at UCSF, led contributors via the survey findings, joined by David Kendrick, M.D., M.P.H., who serves as a strategic advisor to Civitas Networks for Well being. He’s the chair of medical informatics on the College of Oklahoma College of Group Drugs and assistant provosts for strategic planning on the OU Well being Sciences Middle.
“Twenty 4 % remains to be a excessive quantity to say that they don’t seem to be positive, in order that’s a pattern that we will proceed to observe to see if that quantity decreases,” Adler-Milstein mentioned.
The survey additionally requested via which QHIN they’re collaborating, and eHealth Trade is dominant there. “We requested what modifications has your HIO made or planning to make in an effort to take part in TEFCA. What do you must do to take part? Forty-seven % mentioned that they needed to do work with their authorized agreements or insurance policies, and 35% mentioned they’ve technical infrastructure work to do, whereas 24% mentioned they produce other infrastructure work,” she mentioned. “Twenty % made modifications to the forms of providers supplied. This provides us a way of the funding that HIOs are dealing with as they’re making an attempt to make choices. That is on the associated fee facet of the equation.”
The survey additionally requested what quantity of HIO members are collaborating in TEFCA via the HIO. “It’s one factor for the HIO to say, sure, we’re collaborating, but when they are not bringing alongside the vast majority of their contributors, that is clearly going to impair the worth of TEFCA participation,” Adler-Milstein mentioned. “At this level, 56% say that only some of their members are collaborating. Solely a minority say that every one or most are collaborating.” That is solely information from the 16 HIOs which can be already collaborating. “This might simply be early information earlier than there’s actually had time for all of their HIO members to to have the ability to be a part of. This can be a very vital one to trace over time,” she mentioned.
Of those who have had some engagement with a QHIN, 13% say they’re very happy, 21% say happy, and 31% are kind of impartial at this level. When requested about satisfaction with TEFCA challenge response, virtually half of them say that they have not reported a problem but to the to the RCE. So there may be restricted expertise at this level with challenge response.
“We’re actually curious to see in our subsequent administration of the survey the place these numbers are trending, as a result of I believe that is actually an early snapshot of experiences beneath TEFCA. I believe they’re actually making an attempt to know the associated fee/profit relationships,” Adler-Milstein mentioned.
Turning to monetary viability, Adler-Milstein mentioned the survey asks HIOs: Does earnings from contributors cowl your working bills? Utilizing that as a marker, a few third of HIOs report that they’re at that marker of monetary viability.
Kendrick referred to a Well being Affairs article that got here out with the headline saying one thing like HIEs are dying as a result of there are fewer of them than there have been a few years earlier than. “We all know that was not the via line. The via line was consolidation. The unique mannequin was let a thousand flowers bloom and see what survives. The true metric right here, I believe, could be one thing like: What % of People are served by a well being data group or what % of information density is on the market there? Then with regard to the monetary viability, I simply wish to emphasize this for everyone who appears to be like at that and says, ‘Holy cow, two-thirds of us are going away if we do not repair one thing.’ That is saying 35% of HIOs report they make the entire cash wanted to maintain themselves completely from participant charges, no Medicaid {dollars}, no grant {dollars}.”
The listing of providers that HIOs present will get longer yearly as a result of HIOs are discovering new use instances. The dominant one which’s been on the prime of the listing throughout many surveys is alerting and occasion notifications like ADTs. That is adopted by constructing a neighborhood medical or well being document via aggregating throughout a number of sources. Additionally towards the highest of the listing is query-based trade. About two-thirds of HIOs are saying that they are supporting providers across the Direct protocol, information normalization, outcomes supply, remodeling different doc sorts or repositories into CDAs.
The survey additionally requested about some service choices which can be geared extra towards value-based cost fashions. Three-quarters of HIOs are offering information to permit evaluation by a community or supplier — a supplier profiling and efficiency use case, adopted by actions associated to high quality measurement, like producing, validating, and reporting out high quality measures. Towards the underside of the listing are issues like registry providers. 1 / 4 of HIOs say that they’re supporting a use case round closed-loop referral monitoring.
Adler-Milstein mentioned that one stunning factor within the survey was that two-thirds of HIOs say that they are capturing information on meals safety, housing, transportation, after which to a lesser extent employment standing and interpersonal violence. “That is an space the place we’re seeing new worth add from capturing social wants information,” she added.
There wasn’t a number of exercise reported round use of FHIR, and Kendrick mentioned he wasn’t shocked. “In actual fact, I did not anticipate many organizations to be receiving FHIR in any respect. Most hospitals and clinics are simply not prepared, and even when their vendor claims to be prepared, that is not the model that is put in in most locations. I used to be shocked there wasn’t extra FHIR on the sending information facet, that means exposing a FHIR API. That is in all probability the core functionality of a well being information utility technical functionality that must be achieved within the subsequent spherical. So that is the one I will be watching to see if we will develop it.”
Mapping to LOINC codes
The survey requested a number of questions on LOINC and the way a lot work it’s taking for HIOs to map from non-standard laboratory take a look at outcomes to LOINC codes. A few third of HIOs report that they are having to do the mapping work, and 15% say that every one or most of their outcomes want that mapping work executed. Nearly half say that they are having to try this for at the least a few of the outcomes. “So there may be a number of friction and work nonetheless to get to standardized lab information,” Adler-Milstein mentioned. “Many report some challenges with the assets required to try this, to keep up mappings, or a lack of understanding to have the ability to do this mapping.”
Anecdotally, Kendrick mentioned that even some reference labs usually are not appropriately utilizing LOINC when sending leads to, “and that is only a crucial drawback that has to get handled. There’s a want to lift the extent of consciousness of that at ASTP. The second factor that I might say is that is in all probability an space that may be nice to ascertain a neighborhood of follow among the many networks, as a result of all of us ought to strategy fixing this drawback in an analogous approach. I might assume the info coming to us may be very related and coming from the identical distributors.”
