Health information exchanges (HIEs) are scrambling to respond to COVID-19, as are all parts of the healthcare delivery system. Many have proven to be ready and invaluable assets, but significant variation among the states’ exchanges means that some are more prepared to assist than others.
The most capable exchanges are quickly deploying toolsets and sharing data streams that are greatly valued by their state’s public health departments and healthcare leaders. These successful models should be adopted across the country and scaled up to improve disease surveillance, shared reporting and care team engagement, but it will require changes to the way many are organized and operated.
A hallmark of the COVID-19 response thus far has been the need for accurate information on the disease progression, both for individual patients and at the population level. Health information exchanges are responding by using their well-established information networks in new ways. For example, they are:
These and other capabilities are accomplished through partnerships with public health agencies by combining the clinical and claims data available through exchanges with the reportable conditions and other mandatory reporting data available to public health officials.
Yet, such successes are not widespread. Many states lack an HIE with a sufficiently complete network or are home to an exchange that never formed partnerships with public health agencies. Beginning with the HITECH Act, part of the American Recovery and Reinvestment Act, nearly every jurisdiction attempted to stand up an exchange. Some states never reached critical mass. In others, competition among regional or metropolitan health information exchanges that do not interoperate has resulted in data fragmentation. Still others have exchanges which are under resourced and don’t possess the know-how to use their connectivity in support of public health purposes.
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Recognizing both the power of HIEs in support of public health and the checkered success of past exchange investments, we recommend a new approach. The four following recommendations would see the HIE networks recast as health data utilities, eliminating the current information fragmentation that hinders our response to COVID-19—and ongoing support for public health in non-emergent times—while creating an infrastructure to enable the innovation of private enterprise.
We embrace the important principle that the basic movement of clinical information should not be constrained, other than by patient privacy concerns. No organization (exchanges, EHRs, or for-profit market suppliers) should be able to use the possession, constraint and/or control of access to health records as an essential element of how it creates value. Borrowing from the electric utility model, the responsibility for basic connectivity should be given to a not-for-profit organization designated by the state to operate a regulated network over which everyone can transmit information, while generation of useful insights and innovative services should be competitive.
To put this more simply, the connectivity network of a state exchange would appropriately be a monopoly in the interest of society, but the movement of clinical information should advance innovation and competition. With appropriate economic and patient privacy protections, both not-for-profit HIEs and for-profit firms should be allowed to leverage the transmission lines. This approach is consistent with the prohibitions on information blocking in the 21st Century Cures Act, and policy makers should ensure that any designated exchange lives up to the spirit of the law.
The not-for-profit HIE organization would be governed by corporate boards comprised of community stakeholders and regulated by the state or public-private regulatory commissions. They would coordinate with both public health departments and Medicare/Medicaid to enhance connectivity, which will serve the public good.
Medicare/Medicaid conditions-of-participation and expanded state-mandated reporting are policy levers that should be used to ensure health information exchange connectivity and data collection are sufficiently complete to meet the needs of public health, with appropriate patient privacy protections as approved by the regulatory body.
While some exchanges have been successful without state designation, many have not, leading to piecemeal capabilities and fragmented data. Designation of a specific organization by the state creates clarity, eliminates fragmentations, and enhances the ability to work with public health leaders. To operate in concert with public health authorities, the service geography of designated exchanges should generally be state boundaries. This does not preclude an entity from serving multiple states; but it would need to conform to regulatory and other expectations of the respective states it serves.
While state designation is appropriate, sharing significant investments—such as a single technology stack across multiple states—can create pronounced economies of scale. We observe this to be true in our own organizations.
Not-for-profit HIEs affiliating with each other, or relying on a common shared services team, can appropriately focus on the priorities of their home jurisdictions while spreading operating costs and using talent more broadly. Innovation in one state will quickly propagate to other affiliated states, demonstrating the principle of reuse, which Centers for Medicare & Medicaid Services have prioritized. Such cooperation between states is currently helping HIEs improve their response to COVID-19 and that success should be built upon and scaled.
We envision formal affiliations among health information exchanges—like college football conferences—that will allow resources to be shared and create unified regional service offerings. While this vision is fundamentally cooperative, it still allows exchanges to change affiliation when their current affiliation no longer serves their needs. A degree of competition among these conferences would encourage innovation and prevent complacency. In this way, state-designated HIEs would functionally begin to operate as a smaller handful of organizations, like the consolidation seen in the Quality Improvement Organizations, or QIN-QIO, program.
This approach to consolidation comes with two key additional benefits. First, unifying nationally into a small number of affiliated conferences will simplify cooperation with federal agencies and dramatically lower barriers to exchanges serving as a vital component of national interoperability. And second, exchanges offering services on a regional scale will enable national payors, pharmacy chains and others to contract with a manageable number of affiliated networks.
Simple clinical document transport should be ubiquitous and easy, as the 21st Century Cures Act and the Trusted Exchange Framework and Common Agreement model of national health data exchange envision. A doctor should be able to retrieve a patient’s prior discharge summary without a local intermediary, although she may choose to use her local health information exchange as an enabler of improved patient matching and record location.
Today, if health information exchanges were bypassed by clinical document transactions, they would not receive the data necessary for advanced use cases. And so, exchanges are predisposed to resist ceding point-of-care transactions to national exchange. But the state-designation model described above, with mandated connectivity, would solve this problem. Exchanges could focus on creating value based on leveraging the statewide normalized community data repository, including the most important information, such as diagnoses, medications, care team information, immunizations, allergies and labs. The exchanges would prioritize data needed for public health and support medical research with governed access to real-world data. State-designated exchanges with mandated connectivity would create new opportunities for real-time surveillance during health emergencies and seasonal epidemics, for example, monitoring encounter volumes at urgent care centers, trending chief complaint volumes even for non-reportable conditions, and prompt age stratification of disease-specific hospitalizations.
Because basic records for a patient could be pulled on demand, exchanges would focus on other advanced capabilities, such as shared population health reporting, which is an important community asset in the COVID-19 response, on special alerts that assist clinicians at the point-of-care, and on social determinants of health. For certain advanced services, exchanges would likely compete with for-profit firms which, operating as business associates of healthcare providers or with the authorization of patients, may leverage the exchange’s connectivity to build innovative tools.
Another advanced use case will be unified patient consent registries. State-designated health information exchanges are natural operators of state-based registries that will give patients a level of control and protection, including consolidated accounting of medical record disclosures. Many observers believe patient protections must be improved, and as the doors open to patient-authorized applications which do not operate under HIPAA, consent registries will ensure patients understand where their information is going.
One of the most basic exchange capabilities is informing members of a patient’s care team of hospitalizations in real time. This simple service has proven to be immensely valuable. Such push transactions allow for coordination within a healthcare system that patients sometimes experience as fragmented, and it is a critical tool for epidemiologists during the COVID-19 response. Both health information exchanges and for-profit networks operate these services, but because they do not interoperate, in many states a provider cannot turn to any one entity to learn, for instance, about all hospitalizations for her patients.
Many exchanges have begun work on this problem through a network called the Patient Centered Data HomeTM (PCDH), an initiative of the Strategic Health Information Exchange Collaborative (SHIEC), an industry trade association. The network is a start toward a nationwide system, and it could become the basis for ubiquitous interoperability. Critically, to serve such a role, it would need to open up to all stakeholders, including for-profit interoperability market suppliers—assuming they are willing to agree to fair and pro-competitive data-sharing. Such firms will use encounter notifications as business associates of health plans and provider organizations, querying for additional data to facilitate care management and decision support. Patient-authorized applications will use encounter notifications as a signal to query records on the patient’s behalf. As noted above, state-designated exchanges should have this connectivity by mandate and should be compelled to allow other firms to leverage the network for the transport of data. And like the electric utility, this principle must apply even when the other firm is a competitor.
Reshaping the nation’s health information exchange networks as state-designated health data utilities offers distinct advantages to other models for an infrastructure to enhance public health capabilities.
As not-for-profits governed by stakeholders and regulated by states or public-private commissions, HIEs are trustworthy, neutral entities and experienced at managing health data and protecting privacy and have long lived under strict rules, carefully developed by the community, for the use of patient data. A not-for-profit exchange is a good vehicle for deploying public investments, more nimble than a government agency, yet responsive to the policy choices and priorities of public health leaders. And health information exchanges are closely tied to states, which are the key governmental body for managing public health. As in other industries that serve a public good, there can be regulated and unregulated parts of the ecosystem. HIE networks should function like electric utilities, creating regulated connectivity across which the exchanges and private enterprise will innovate and thrive in free market competition.
The views and opinions expressed in this content or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.
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