As Managing Editor Rajiv Leventhal noted in a May 6 report, “A study of health information exchanges (HIEs) across the U.S. reveals that 56 percent plan to participate in the government’s Trusted Exchange Framework and Common Agreement (TEFCA) framework that aims to connect islands of electronic data sharing. The research, conducted by Julia Adler-Milstein, Ph.D., a professor of medicine and director of the Center for Clinical Informatics and Improvement Research, School of Medicine, at the University of California San Francisco (UCSF), and others at UCSF and the Office of the National Coordinator for Health IT (ONC), was published in the May issue of Health Affairs.”
That statistic was one of a number of important data points that Dr. Adler-Milstein and her colleagues, Anjali Garg, Wendi Zhao, and Vaishali Patel, uncovered in their article, based on the survey of HIE leaders. As Leventhal noted, “The researchers noted in their piece that the TEFCA national framework creates new potential opportunities and challenges for state and local HIEs. As such, they undertook their sixth national survey to assess the current state of HIEs and to newly examine anticipated responses to TEFCA. They identified 89 operational HIEs—or as the authors refer to them throughout the article, HIOs (health information organizations)—down from 106 in 2014. Although more than half of these health information exchanges struggled with financial viability and competition from health IT vendor–based HIE networks, many are large in scale, offer a breadth of services to diverse participants, and engage in network-to-network connectivity, they concluded.” And, he added, “Looking ahead, 56 percent of HIEs reported that they plan to participate in TEFCA, and 41 percent were unsure. As the Trusted Exchange Framework and Common Agreement advances basic network-to-network connectivity, HIEs that have experience with such connectivity while also offering value-added services will be well positioned for sustainability and growth, the researchers opined.”
There is much complexity here: The researchers note that “Achieving broad-based electronic health information exchange (HIE) is proving one of the most difficult components of the Health Information Technology for Economic and Clinical Health Act of 2009 and has required ongoing policy making. Successful HIE at scale involves coordination between many stakeholders, including federal and state policy makers, a diverse array of health care delivery organizations, electronic health record (EHR) and HIE vendors, and specific organizations supporting HIE, such as state and local health information organizations (HIOs) as well as national-level HIE networks. Further, the issues requiring coordination are diverse, spanning technical standards, consent regulations, business models and incentives, workflow integration, trust and governance, and information privacy and security,” they note.
That said, “The number of HIE networks has grown from just a handful of local HIOs a decade ago to more than one hundred disparate networks at the local, regional, and national levels. As a result, health care providers often use a variety of different networks and methods to exchange health information, increasing the complexity and costs of HIE. In response, new efforts—notably the Trusted Exchange Framework and Common Agreement (TEFCA)—seek to better coordinate these varied approaches to HIE. The goal of TEFCA is to have a single “on ramp” to nationwide connectivity. Qualified Health Information Networks will connect directly to each other to facilitate nationwide interoperability, such that once a participant (such as a hospital or health system or an HIO) signs up with a Qualified Health Information Network, they will be able to connect with other participants in the TEFCA network.4 Nationwide connectivity will expand as the number of Qualified Health Information Networks and associated participants in the TEFCA network increases. Qualified Health Information Networks agree to abide by the terms of the Common Agreement, which includes governance and technical requirements to enable HIE across disparate health information networks nationwide. Although the Common Agreement most directly affects the Qualified Health Information Networks, applicable flow-down clauses will be included in agreements with these networks’ participants (such as HIOs) and participant members.”
The researchers see the full complexity of the landscape for HIE leaders in the moment, writing that “A federal approach that moves toward connecting HIOs to each other and to national networks (such as eHealth Exchange) comes at an already dynamic time for HIOs. There is a growing trend of HIO consolidation, perhaps in response to tremendous pressure to demonstrate a robust value proposition—particularly one that goes beyond simply moving data across participating organizations. Therefore, TEFCA offers opportunities (in terms of offering HIO participants expanded connectivity) as well as risks (in terms of more directly competing with other HIE networks that offer the same connectivity). Because participation in TEFCA is voluntary, it is critical to assess the current HIO landscape and how HIOs anticipate participating in TEFCA, to gain early insight into progress toward nationwide connectivity under the Common Agreement.”
What did the researchers find this time around? Well, for one thing, that, while the number of HIEs in operation has fallen in the past several years, their financial viability has strengthened considerably. “Although the number of operational HIOs increased from 2007 to 2012,” they write, “we found that this number decreased by approximately 25 percent from the peak of 119 in 2012 to 89 in 2019. Similarly, the number of financially viable HIOs increased from 2009 to 2014 but decreased by 6 percent between 2014 and 2019. However, the proportion of operational HIOs that were financially viable increased from 24 percent (28 of 119) in 2012 to 46 percent (49 of 106) in 2014 and 52 percent (46 of 89) in 2019.”
What about statewide breadth? The article’s authors write that “We found that forty-five states (including Washington, D.C.) were covered by one or more operational HIOs that reported a statewide catchment area. There were six states without coverage (Idaho, Illinois, Mississippi, Montana, Nevada, and New Hampshire), which included 301 health service areas (9 percent) of the total 3,436 health service areas in the country. A total of 2,770 health service areas (81 percent) in the US were in the catchment area of at least one operational HIO. Notably, 32 percent of health service areas had more than one HIO.”
Meanwhile, the researchers sought also to determine the level of maturity of currently operating HIEs. “We examined several measures of maturity,” they write. “The largest group of HIOs had been operational for six to ten years (57 percent). HIOs achieved scale in terms of the number of participants: The median number of hospitals providing data to the HIO was 24, and the median number of providers able to use the HIO was 3,000 (with an estimated 73 percent considered active users, on average) (appendix exhibit A2). HIOs also achieved scale in connecting to multiple EHR vendors (median: 12) and in facilitating data exchange for a large population of patients (estimated median number of patients in the Master Patient Index: 2,490,000).”
What about participation in nationwide collaboratives? “More than half of HIOs reported connecting to other HIEs in the same state (57 percent) and in different states (53 percent),” the researchers write. “Most HIOs also reported that they participate in a national network including eHealth Exchange (67 percent), DirectTrust (46 percent), and Strategic Health Information Exchange Collaborative Patient Centered Data Home (38 percent). When asked about potential TEFCA participation, 56 percent of HIOs reported that they plan to participate, 3 percent said that they do not plan to participate, and 41 percent said that they didn’t know. The 56 percent of HIOs that plan to participate in TEFCA were similar to HIOs not planning to participate or didn’t know in terms of size (number of hospitals), duration operational, financial viability, selling or providing their infrastructure to other HIEs, buying or using infrastructure from another HIE, and connecting to other HIEs in the same state. However, they differed on two characteristics: whether they connect to other HIEs in different states, with 64 percent of TEFCA participants saying they do, compared with 38 percent of those that were not planning to or not sure about TEFCA participation; and whether they participate in at least one national network, with 90 percent of TEFCA participants saying they do, compared with 72 percent in the other group.”
So, what to make of all this data? It seems clear that the senior leaders of HIEs nationwide are in a very particular situation right now: those that survived the loss of grant funding several years ago and found solid ground in terms of business models and governance, have grown stronger over the past several years, with the percentage of HIEs that are financially viable having increased from 24 percent in 2012, to 46 percent in 2014, to 52 percent in 2019. And many of those HIEs are statewide organizations.
One key element in this involves how the policy landscape will play out over the next few years; and, as everyone knows, there are large question marks hovering over that landscape. Indeed, how the TEFCA is ultimately architected—and, really, the Devil will be in the details there—will help shape the strategic landscape for HIEs going forward.
And, overall, it seems clear that those HIEs that didn’t crumble in the past few years, ended up becoming stronger over time, as their leaders created foundations for them that have helped them to survive the challenges of the past few years. Indeed, the statewide HIEs with the strongest foundations going into 202 have also been among the best-positioned to leverage their strengths during the current COVID-19 pandemic, developing strong working relationships with state health departments, and plunging into biosurveillance-related activities that have brought them plaudits from state health officials.
And in interviews that I’ve conducted recently with the CEOs of statewide HIEs in Maryland, Michigan, and Colorado, those CEOs have expressed great optimism for their future, as they continue to strengthen their foundations and expand their offerings in strategic ways. (Please keep your eyes peeled for the May/June cover story on this issue, which will appear soon.)
Without a doubt, there remain large questions hanging over the HIE sector. But for the senior leaders of the most successful HIEs, the future offers opportunities as well as, inevitably, ongoing challenges. Ultimately, those HIEs that are already currently the best-situated will likely remain the best-situated, even as the policy elements of this landscape get worked out. It will be fascinating to see what this landscape looks like a year ago. One thing is clear: visionary strategy, coupled with pragmatic grounding, will be more essential than ever.
