We are in the midst of an exciting resurgence of interest in health information exchange (HIE) in California. Bills in the state Assembly and Senate seek to chart a path for statewide data sharing, and Governor Newsom’s budget includes a strong endorsement for action on HIE.
However, the factors driving shared interest – which range from the response to COVID-19, to new federal rules, to a focus on health equity – do not imply shared understanding of HIE today, or a common vision for the future. One hears both that there is very little meaningful data exchange occurring between providers in California, and that it has all been worked out, with data exchange already widespread. How can such divergent claims arise? From my perspective, there are two related explanations: a lack of alignment on definitions of key terms, and the highly variable experience of data exchange. People are using the same words to describe very different experiences. We will publish an issue brief on the HIE landscape in California with the California Health Care Foundation (CHCF) in the weeks ahead that describes the primary types of data exchange occurring in the state today. The issue brief explores these themes through an in-depth examination of data-exchange dynamics in four local markets: Los Angeles, Fresno, Sacramento, and Humboldt. A mid-stream, summary analysis was published in February.
This post, in contrast, describes a potential “grand bargain” between Assembly Bill 1131 and Senate Bill 371 that would establish a framework for all providers in California to access reliable, complete, high-quality patient data within their EHR workflows. To cut to the chase: should California impose an HIE mandate on providers and payers to share clinical data through a statewide Health Information Network (HIN)? This is the core thrust of AB 1131, which is supported by a broad spectrum of payers, providers, and other stakeholders (see the Connecting for Better Health website for a better understanding of this coalition). SB 371, in contrast, proposes a network-of-networks approach that builds on Health Information Organizations (HIOs), with a common gateway to simplify data-sharing with state agencies. Supported by the major hospital and provider associations, SB 371 does not include a data-sharing mandate (beyond re-affirming the importance of compliance with federal rules), but it does include a requirement that HIOs join the California Trusted Exchange Network (CTEN) and an approved national data sharing network.
While those of us in the HIE world may focus on the statewide-vs-regional HIO orientation of the two bills, this is not the core issue at stake for California. In fact, both bills speak to a data aggregation layer – let’s call it the HIO layer – with statewide presence, via a combination of regional HIO and state-level infrastructure. So, while they emphasize different ways to accomplish this, they both promote an integrated and interoperable HIO layer across the state, and by the time of implementation we will likely end up with a hybrid model linking interoperable regional and statewide systems. Instead, the core difference in the bills is the mandate for data sharing with a state Health Information Network (HIN) in AB 1131, and the requirement that HIOs participate in both CTEN and an approved national network in SB 371. I propose that a grand bargain with statewide benefit can be reached by implementing the spirit of both of these requirements. Let me explain why and how.
First, why attempt this bargain? Because we should play to the comparative advantage of existing data exchange methods to maximize overall value for the people of California. As we detail in the forthcoming issue brief with CHCF, EHR-centered data exchange via three national networks (eHealth Exchange, Carequality, and CommonWell Health Alliance, the “National Networks”) predominates at the point of care today, enabling providers to access patient data from outside their organizations within their EHR. The workflow and business advantages of this method, at least conceptually, are overwhelming. Providers stay in their primary electronic system to access external data, which they strongly prefer, and EHRs bundle data-sharing into their contracts with their customers, dramatically lowering barriers to entry to data exchange networks. However, if you look under the covers, EHR-based use of the National Networks is hampered by serious data and workflow issues, significantly reducing their value. Both too much and too little data is available to providers in their EHRs via this method, often eliminating the value of using them, especially outside the large health systems – which are most likely to invest in complex and expensive methods to deliver actionable external information, within workflow, to their providers.
The HIO data layer, in contrast, often sits outside of EHRs and provider workflows at the point of care; nor do HIO services tend to be incorporated into EHR contracts with providers. Together, these disadvantages weigh heavily on their adoption and use. However, the primary value of an HIO layer derives from the ability to enhance data quality, or the completeness, validity, consistency, and accuracy of data – precisely what the National Networks lack. Unlike the National Networks, which do not store data but instead enable participants to share data directly with each other, HIOs aggregate, link, harmonize, and clean data from a wide variety of sources, redistributing data of a much higher quality than what they ingest. Think of this almost like a filtering function, with HIOs serving as stewards of the precious resource that is patient data, not only establishing comprehensive records for individuals, but also powerful data sets at the community and regional levels to support population health monitoring and improvement. In the first instance, this value depends on the completeness of the data set, and the HIO layer in the state has nothing like a complete data set today. (Furthermore, as mentioned above, larger health systems often perform these functions internally for their own providers, causing them to perceive the value proposition of the HIO layer in a very different light than smaller provider organizations might).
But imagine if you combined the advantages of the National Networks integrated into provider EHR workflows with a complete and high-fidelity external data set via an HIO layer. Achieving this outcome on a statewide scale, through aligning the comparative advantages of the National Networks and HIOs, is the primary rationale for a grand bargain on HIE in California. It would unlock dramatic improvements both in patient care and in the provider experience of accessing external data to provide this care.
How, then, would the bargain work? First, by addressing the need for data completeness in the HIO layer through a mandate for data-sharing as envisioned in AB 1131. Second, by requiring participants in the HIO layer – the Health Information Network (HIN) in AB 1131, regional HIOs, and approved commercial services, potentially – to join the California Trusted Exchange Network (CTEN) and a National Network, as broadly envisioned in SB 371.1 And third, by the state, which has historically avoided funding HIE, stepping up to partner with payers to fully fund the core functions of the HIO layer (with as much federal support as possible), rather than HIOs or the HIN charging providers for these services.
An active HIO presence on the National Networks enables providers to query for and retrieve an HIO’s high-quality, comprehensive individual record, within EHR workflows that providers use today. This transaction pattern is already happening between some HIOs and major health systems. State support and a mandate for provider and payer data submission would definitively establish a “golden record” in the HIO layer as the go-to source of truth for providers using the National Networks in their EHR workflow, greatly alleviating the onerous task of sifting through clinical documents from multiple sources. This would meaningfully improve the viability, experience, and population health impact of data exchange in California through aligning the strengths of the National Networks and HIOs.
If this approach delivers substantial collective gains, who has to give something up to make it happen? Many providers do not want to be subject to a data-sharing mandate, believing that clinical data aggregation should occur within their organizations in their EHR, and they may not want to incur the costs of joining an HIO. Meanwhile, most HIOs do not fully participate in the National Networks, because doing so opens up their data to organizations outside their circle of contracted and paying members, decreasing the incentive for these organizations to join them. The bargain, then, would require providers to be mandated to share data with an HIO layer (as in AB 1131), and HIOs (including the HIN) to be mandated to share their high-quality data with all providers in the state who have onboarded to the National Networks or CTEN (as in SB 371), in accordance with all applicable laws and regulations. And the state would need to commit to long-term financial accountability for this venture, with support from federal and payer partners; resulting efficiencies in our health care system would more than repay this investment over time.
While there are multiple viable paths forward for HIE in California, the grand bargain outlined here would have a powerful positive impact on the people of our state and the health care providers who serve them.
 CTEN represents a critical axis in this model, building on its current role as the key link between HIOs, the National Networks, state agencies, and large health systems; as such, CTEN provides a tremendous policy and governance opportunity for the state. California HIOs and others can onboard to the National Networks via CTEN, in fact, on advantageous terms.