Despite the public and private investments made in health information exchanges, there have been relatively few empirical research studies on their impact. Why is that?
Two professors from the Fairbanks School of Public Health at Indiana University Purdue University Indianapolis (IUPUI), Valerie Yeager and Joshua Vest, recently interviewed other HIE researchers and published a paper that identified seven common barriers to HIE research (HIE maturity, data quality, data availability, goal alignment, cooperation, methodology, and policy).
Yeager and Vest’s team conducted qualitative interviews with 23 HIE researchers and leaders of HIE efforts representing experiences with more than 20 HIE efforts. They also conducted a six-person focus group to expand on and confirm individual interview findings. They then did a qualitative analysis. I recently spoke with them about their findings.
HIE maturity is an issue for researchers because it takes time for usage to ramp up, Vest said. “We are seeing more usage and more data flowing in all HIEs, but from the research perspective, when a lot of us started, these were new and novel.” There is a difference between adoption, implementation and usage, he noted. “They have different time horizons and barriers and challenges. All have different levels of difficulty in measuring.”
That leads to questions about data availability. Although government entities are paying for some portion of HIE development, that doesn’t necessarily mean that researchers get access to the data. Contracts with vendors managing HIE data may not contain language about research access.
Yeager noted that EHRs and HIEs were not designed for evaluation purposes. “I wish it were as simple as saying to the vendor we would like to see if the following things were done in this setting among these folks. Just pull this data for us and de-identify it, please,” she said. “It is not that easy. If it were that easy, vendors would probably be more likely to pull data for you. But the technology wasn’t designed for that.”
Some regional health information organizations Vest has worked with in New York State mandated evaluation and research as part of their grants. “That reduces a lot of barriers right from the beginning,” he said. “One of the requirements of getting the funds is participation in evaluation. That addresses a lot of the problem and facilitates data access. But not every agency funding HIE development was making those requirements.”
Yeager said it is worth having a discussion about whether there is a policy mechanism that would require vendors to provide the necessary data to evaluate the effectiveness of HIEs.
Poor data quality is an issue for researchers who want to get beyond usage numbers to assessing the impact on effectiveness and clinical outcomes. “Some of the data we were getting was operational data,” Yeager said. Pulling data on interactions with patients is different than just reporting on how many people logged into the HIE,” she said. “In the beginning a lot of the data we were getting was operational and it was aggregated. It wasn’t very useful for doing robust analyses of the value of HIE.”
One interviewee told them: “You can build the most robust health information exchange and have complete access to all the data and put it into the most scalable and most adaptable and flexible analytics tool imaginable, but if the data [being collected in the HIE] is crap you’re not going to be able to find anything in your evaluation.”
I asked Vest and Yeager what would help enable future research efforts on HIEs’ impact. Vest said it would be phenomenal if health information organizations willing to participate in research would raise their hands. “We would like them to say yes we would be willing to participate in research, and be active, engaged partners and work through issues to find answer questions that are valuable to everybody.”
He mentioned several HIEs that have committed themselves to research: the Indiana HIE, the Rochester RHIO in New York, HEALTHeLink in Buffalo as well as Healthix and the Bronx RHIO in New York City. “They are interested in getting using information to make improvements. Having more of those organizations and particularly ones that have wide reach and even national activities would be very helpful.”
As HIE matures, assessing its impact becomes more important. “Research needs to be done to see what works and what doesn’t work,” Yeager said, “and to find ways to improve how the health information technology is functioning or how patient care is or isn’t being delivered or patient needs are or aren’t being met.”
The full study is well worth the read for anyone interested in assessment of the impact of HIEs. Access it here: https://egems.academyhealth.org/articles/abstract/10.5334/egems.217/