Enough predictions about the future of health information exchanges (HIEs) have already been written by industry luminaries and observers to fill a few books by now. Yet the reality is that no sector of the U.S. healthcare industry has been subjected to more shifts in policy, payment, operational, and other trends in the last several years than the HIE sector. Following the initial flurry of HIE development a decade ago, the eventual loss of the federal and state funds that facilitated the founding of HIEs has led in the past five years to the shuttering of HIEs in every region of the country.
Yet the core “Platonic ideal,” if one could frame it thus, of HIEs has remained relatively constant, even as the bases on which actual, specific HIEs have been maintained, has continued to shift. The idea of creating semi-independent organizations to facilitate the appropriate sharing of clinical and related data between and among providers and between and among providers, payers, public health agencies, and so on, retains its appeal as a concept. The challenge remains in the details: what precisely should HIEs be doing, with and for whom, and on what economic or financial basis?
In that regard, the COVID-19 pandemic has had a major impact on the ever-evolving HIE sector. Those HIEs that were already operating on a statewide level, and that already had in place some kind of ongoing working relationship with their state health departments, found themselves well-positioned to play a key role in the pandemic—that of important link between public health and patient care organizations. CRISP, the Columbia, Maryland based HIE that is the designated statewide HIE for Maryland and also for the District of Columbia, is one of several HIEs that have made important inroads in that area. IHIE, the Indianapolis-based Indiana Health Information Exchange, also found itself very well-positioned at the outset of the pandemic, because of its already established tight relationship with the Indiana State Department of Health. A number of other statewide HIEs had also established such relationships, which put them in enviable positions last year, as the need for the exchange of data around COVID-19 testing, COVID-related inpatient and other utilization, and other data, became extremely important.
Certainly, a “burning platform” became clear early on in the pandemic. As Darius Tahir wrote in an April 2, 2020 report in POLITICO, “The surge in coronavirus testing was supposed to give public health officials a better grip on who’s sick and where. Instead, it’s exposing gaps in reporting, raising concern about whether complete results and basic information about patients that test positive is getting through to officials and health workers trying to contain the pandemic. A hodgepodge of federal and state mandates on big commercial labs like Quest Diagnostics and others running tests have created reporting holes, even as about 100,000 are processed daily. Public health officials lack contact information of some who test positive. Primary care physicians don’t always get their patients’ results. And big lab companies are withholding results from digital patient data vaults that health providers and officials tap to coordinate care,” he wrote. And he quoted Kristen Maki, a spokesperson for the Washington state health department, as stating at that time that “Getting incomplete information is an ongoing problem we face, made more difficult by the exponential volume of results we’re dealing with in the COVID-19 response.”
Everything that’s happened during the COVID-19 pandemic is drawing attention to a question that many are asking right now: could a nationwide network of statewide HIEs provide the foundation for a new public health data infrastructure for the country, one that could provide reliable and detailed data reporting up from the patient care organization level to the state level to the federal level, to support the Centers for Disease Control and Prevention (CDC), the Centers for Medicare and Medicaid Services (CMS), and other federal agencies under the umbrella of the U.S. Department of Health and Human Services (HHS), at a level that until recently wasn’t possible? And is such a goal attainable? Certainly, the fact that most states still do not have actively functioning statewide HIEs remains a major obstacle to such a vision.
But that doesn’t mean that federal healthcare policy officials haven’t been thinking about it. Micky Tripathi, Ph.D., the National Coordinator for Health IT, who came into his role on January 20, the day on which President Joe Biden was inaugurated, sees organizations like CRISP and IHIE as perfect examples of what could be. Asked whether HIEs have finally come into their moment now, in the midst of the pandemic, he says, “We’re a really complicated and diverse country, with all sorts of unique markets and local circumstances. In terms of CRISP and IHIE, those HIEs have shown us what a really strong HIE with a durable foundation, and strong relationship with state government, can do. But so many parts of the country don’t have HIEs like CRISP and IHIE. Where those HIEs have been strong, yes, they have proven themselves in those markets that can support them, and they’re really valuable. But in other parts of the country, they don’t exist, so how you would scale that? That’s the challenge we would face that we’ve been facing for 20 years.”
Indeed, says Tripathi, who was the founding president of IHIE years ago and who then spent a number of years as CEO of the Massachusetts eHealth Collaborative before spending a short period of time as chief alliance officer of healthcare data and software company Arcadia, says the challenge overall right now is that “You have just so much variation” that no single HIE model exists on which to base a national network, at the moment. “In some markets, like Indiana, they were able to engage the stakeholders early on, to become a core part of the fabric; in other places, not so much,” Tripathi observes. “So, nationwide, how do we raise the level of public health capability across the country—a whole ecosystem, rather than some kind of knitting together of pipes? And if you think about EHR [electronic health record] systems being able to integrate and provide information, perhaps in a bidirectional way, with public health and the CDC, we’d want that to happen equally in all markets. On the other hand, in certain markets, where you have more full-blown state HIE capabilities, it will be easier to use those entities as conduits perhaps, and for statewide HIEs, you could do more.”
Donald Rucker, M.D., who was Tripathi’s immediate predecessor as National Coordinator, is very bullish on the idea of the creation of some kind of nationwide data network based on existing HIEs. “HIEs have a sort of a unique role; and I think that COVID really brought it out,” Rucker says. “Your readers may understand some elements of the uniqueness, but perhaps not all. I’m primarily talking about the statewide HIEs, which have a couple of interesting attributes. The biggest one is that they cover all providers and potential providers. So when you compare it to the EHR vendor-affiliated exchanges, those exchanges don’t cover people who don’t have a classic EHR.” As a result, he says, “These geographically-based HIEs are in a position to help with clinical elements in the environment; they’re not constrained. Also, they are last-mile operations. So instead of fundamentally lying on a vendor’s tech support or salesforce, you’re relying on last-mile providers.”
Further, Rucker notes, “The thing that is very important is that these are basically all non-profits. So when you’re looking at personal medical data, I think that having public non-profit governance, is pretty important. People are not going to be happy or confident when their data is going to somebody with a data monetization business. Some have analytics services, but they are fundamentally non-profit. And the next thing that’s important is that they can track data across all providers and sites of service, over time.” Ongoing, longitudinal collection of large volumes of data will be the key, going forward, to providing public health officials with the kinds of data they most need, Rucker says; and existing statewide HIEs can supply significant elements of the total picture, in that regard.
Of course, there are already provisions for an envisioned nationwide network embedded in the details of TEFCA, the Trusted Exchange Framework and Common Agreement that ONC (the Office of the National Coordinator for Health IT) released in January of 2018 in a first-draft form and in April 2019 in a second-draft form. TEFCA is intended to provide a common set of rules and operating procedures with the intent of reducing the burden involved in sharing patient data, while improving information quality. One element in TEFCA is its vision of Qualified Health Information Networks, or QHINs, which would be entities that the federal government would authorize as transportation mechanisms to route information between participant organizations. The idea is that multiple QHINs could take part in that transportation activity, according to the framework created in TEFCA. One of the unanswered questions in this landscape is what types of organizations might become QHINs in that framework. Some of the activity taking place right now with statewide HIEs building multistate networks or entities might potentially position those collaboratives for QHIN status down the road.
Across Maryland—and beyond
David Horrocks agrees with Rucker’s statement that existing HIEs can provide a significant portion of the longitudinal data that will be needed. Having served as CRISP’s CEO since 2009, he had already helped to lead the organization through more than a decade of development before the pandemic emerged last spring. “The past year, of course, has been defined in the ways we’ve been serving in the COVID pandemic,” he observes. “CRISP is Maryland’s state-designated HIE, but our technology hub is also used by WVHIN of West Virginia, CRISP-DC, and CONNIE in Connecticut. But the most impressive things we’re doing tend to be in Maryland, where we’re the most mature. In Maryland, where we have all this history with the Department of Health and Medicaid, and other entities, we were well-positioned to be a data hub around COVID. For instance, when the state stood up COVID testing in the vehicle emissions testing locations, they needed a scheduling mechanism. So we provided that, and made sure that the results got routed back to physicians. And that wasn’t something we had set out to do in January 2020, but it was needed in April 2020.”
In that regard, Horrocks says, “Probably the most significant thing we do is data analytics. We receive identified data from numerous sources. And we can put those types of data together. For example, the nation has struggled to get accurate race and ethnicity data; but when you put together COVID testing with medications and prior lab tests, claims data and prior hospitalizations, you’re able to really enhance the COVID testing files with better race and ethnicity data. Let’s say you want to ask, who among those who’ve tested positive, has been admitted to the hospital? You can get that through your hospitalization data, but if you want to understand the percentage of those who have been tested positive and who’ve been hospitalized, you have to combine those two types of data. And if you want to collate that with those with identified chronic conditions, you can use claims data to do that. We were uniquely positioned to do that, because we hold a lot of identified data, as a trusted steward of data. I think that that’s been our most important role in the pandemic; and it will continue to be.”
To take one very specific example, Horrocks says, “Let’s say you want to understand reinfections for people who have tested positive, or infections of those vaccinated. You’ll need the immunization data and the testing data. The immunization data will be by date, for example. And might there be socioeconomic factors? And who among those who test positive are subsequently hospitalized? Well, then you need hospitalization data. And how many who are hospitalized, after being tested and inoculated, and how many end up dying? Well, you need all those different data sets.” And that is precisely the kind of data that statewide HIEs are perfectly positioned to provide, he notes.
John Kansky, CEO of Indiana’s IHIE, absolutely agrees with Horrocks’ perspective, and says that we all need to think about the concept of the “health data utility” as an organizing principle in this context. “The current moment very much feels like an inflection point,” Kansky says. “I did a podcast where the title was something like, are we at an HIE renaissance? I don’t want to dramatize it. Let’s talk about where we seem to be going with HIE and should be going. David Horrocks and I have coauthored one paper and are working on a couple of more,” he notes. “And we’re coming to similar conclusions around what the country should do with HIE, but we’re coming from different histories, IHIE and CRISP. I think that two leaders coming from very different circumstances, but are viewing the industry very differently, is very validating.”
Indeed, Kansky continues, “The pandemic served to shine light on the value of not-for-profit, statewide health information exchanges, because the people who care about interoperability, their focus has drifted to point-of-care data exchange. IHIE and I specifically had been preaching nationally that interoperability isn’t one thing; why are we focused on this single, very narrowly focused use case, around point-of-care data exchange?
Then the pandemic came along. And I’ve concluded that every state should have a statewide, not-for-profit health information exchange. That’s coming from the perspective of someone in a state that until recently had several HIEs. So, every state should have a not-for-profit, statewide health information exchange that works as a statewide public health data utility. Not only does that organization have to serve the historical needs that have been served; but the pandemic has demonstrated that these statewide health data utilities have a responsibility to carry certain water for their state, including but not exclusively, public health.”
In fact, Kansky says, “Every state needs one of these health data utilities for the same reasons we need HIEs to serve doctors and hospitals. But there’s also this need and responsibility to support public health needs and Medicaid needs and others, with what amounts to public health data services. The second part of that, while it might sound like a contradiction, is that I’m a big believer that HIEs, or health data utilities, if you will, cannot or should not be limited to their states’ borders. If you’re in a small state, limiting the spread of your costs, if you will, to just one small state, doesn’t make economic sense. So these statewide health data utilities need to find a way to work with utilizes from other states. We’re starting to see organizations like CRISP, like Nebraska’s HIE [which had been NEHII and is now CyncHealth], like MiHiN in Michigan, create these multi-state organizations.”
Morgan Honea, CEO of the Denver-based CORHIO, Colorado’s statewide HIE, notes that “The immunization information systems nationally don’t have great processes for managing identities,” he says. As a result, it will be necessary to “build out information on who the people are in the immunization system.” That’s for everything, but specifically COVID, and in Colorado, the governor has a huge focus on health equity and access. And you can’t understand how you’re doing in creating health equity and access to vaccination efforts unless you know whether you’re underserving communities of color or rural communities, so that’s where we’ve focused our efforts.”
One particular challenge in Colorado, Honea notes, is that “We don’t have a centralized department of health here; we have the Medicaid agency, we have a public health department, and we have an office of behavioral health. So the structure of agencies is different here, but we’re absolutely partnered with all of those agencies, not to the extent that David [Horrocks] is in Maryland, but working shoulder to shoulder with all three of them.”
More broadly, Honea says, “We have something like 85 projects in the portfolio, 35 of them with a number-one-level priority. That really demonstrates what this last year has been like, with people really recognizing the value of robust HIE. So we’re doing a ton of work in supporting enhanced, enriched identity management services on a number of fronts, for all the reasons we know. We’re getting a lot of requests for the advancing push-type of technology, and trying to build out the data strategies here. We’re continuing to build the core HIE technology, to build off all the ways we provide data, and always expanding the types of data, and how it’s used.
Moving forward into a multi-state future
Importantly, Honea, Kansky, and Horrocks are all involved in multi-state work of some kind. As mentioned above, Maryland’s CRISP also runs the statewide HIEs for the District of Columbia, Connecticut, and West Virginia. That work is bringing dividends to all four organizations, Horrocks notes. “The smaller states should not be building their own infrastructures to do this,” he asserts. “A spoke infrastructure is expensive, and the economies of scale are pronounced. That’s why we have four states that will be sharing infrastructure. The fact is that the privacy and security investments alone would be prohibitive for small states. If we have to spend $2 million a year on privacy and security work, and a small state’s budget is only $1 million, well, that’s a problem.” But, with four HIEs operating collaboratively, Horrocks says, “The economies of scale are exciting. And if something innovative that’s working in the District, we get to use them then in West Virginia and Connecticut. So the sharing of innovation is very helpful. We like having a non-profit affiliated with the state, where there are local folks involved, where this becomes a collaboration. That’s why we have four separate non-profits that are affiliated.”
The urge to merge among health information exchanges continues with the announcement that the HIEs in Colorado and Arizona plan to form a regional health data utility in the West.
A similar story is playing out in the desert Southwest, where CORHIO and the Phoenix-based Health Current last autumn announced a merger. As Healthcare Innovation Senior Editor David Raths wrote on Sep. 30, 2020, “Most recently announced mergers of HIEs have consolidated organizations within a particular state. But Denver-based CORHIO and Phoenix-based Health Current have entered formal discussions to strategically align their organizations to better serve the healthcare data needs in Colorado and Arizona, while preparing for future consolidation in the HIE landscape and possibly for becoming a Qualified Health Information Network under the TEFCA framework. Together, they work with approximately 1,320 healthcare organizations across both states. By coming together, the HIEs say they have the potential to create the largest health data utility in the West.”
As Raths wrote, “CORHIO and Health Current say they are logical regional partners. In addition to their geographic proximity, both operate in good business and financial health, and share similar goals, values, and culture. Both organizations are dedicated to improving care coordination and clinical outcomes for their communities, as well as to supporting their respective state’s HIE and health information technology initiatives.”
Of the combination, Honea says that “The big thing for us right now is our merger with HealthCurrent—leveraging the staff and products and services across both of our organizations, to not only provide services across local communities, but regional, and with organizations like Kaiser and Banner Health. That’s the trend we’re seeing; broader partnerships. And the core activities require the same types of governance and legal structures, staff, and so on,” he notes.
Indeed, Honea says, “There are about 72 to 74 HIEs nationwide right now, and if 70-plus HIEs are providing the same types of services, I’m a believer that we need to simplify processes, both from an administrative and a technical standpoint. We need to streamline and align services. And I think that COVID has shown us that there’s a huge need for this type of infrastructure, to make sure that what we’re building in the public health spaces has the potential to help us close loops and take care of the population. I think that HIEs are perfectly positioned to take on that role, if there’s trust and confidence, and demonstrated capability, capacity, and security and trust.”
The ONC perspective on the future
All of this activity, along so many dimensions, inevitably leads to a policy question: what is the perspective of ONC on all of this? National Coordinator Tripathi sees things moving forward along multiple dimensions. Asked whether ONC itself could facilitate some level of uniformity of strategic advancement in the HIE sector, he responds, “We’re working in partnership with the CDC to think about the future of the public health infrastructure we want to have. Clearly, the CDC is the lead in that. But we help them to figure out how to use standards and EHR technology, and how to leverage what we’ve spent $40 billion on installing, to support public health—both the information itself, the functionality, and the ability to do bidirectional data-sharing. If you look at what’s happened during the pandemic, very little of the data has actually come out of EHR systems; if you compare the information coming to public health authorities from EHR systems, versus nationwide networks, from the EHRs, it’s very small.”
Tripathi is also careful to insert the importance of the work of the CommonWell Health Alliance, Carequality, and eHealthExchange, three nationwide networks working to enhance health data exchange.
Meanwhile, he says, “A large amount of the information contained in HIEs may not yet be flowing to public health yet, because of the way in which public health agencies exist today.” That said, Tripathi says, “There are a lot of places where we can work with HIEs, including through the Star HIE Program [the Strengthening the Technical Advancement & Readiness of Public Health via Health Information Exchange Program], to get immunization data, for example—information that isn’t generally available. This is where you’d have flexibility and a unique position in the market, and they could help us to push the envelope on issues, such as the policy issues you’d encounter, when you try to share information, including around some of the anomalies embedded in HIPAA.”
In the end, Tripathi says, “HIEs are a really important part of the landscape. I think that they should be encouraged, and will hopefully flourish in all sorts of ways. What’s needed, he adds, are “nationwide interoperability networks that provide that type of service; but the bigger challenge is how you scale up to provide services that the market needs and wants.” And that, most certainly will be a subject of ongoing interest, as HIEs move into the future.