Pivoting to a New Model for Community Health Data Sharing

Dec. 11, 2023
Health information exchanges can reinvent themselves as community information exchange (CIE) networks that also incorporate social services, such as housing agencies and food banks and even schools

Health information exchange (HIE) leaders are facing a hard choice as the winds of the policy-driven market blow toward greater and greater coordination between health and social services. Should they stick to the clinical data lane, or do they reinvent their HIEs as community information exchange (CIE) networks that also incorporate social services, such as housing agencies and food banks and even schools? 

Over eight years ago, Martin Love, one of the more forward-thinking HIE leaders in the country at the time, addressed this question in rural Humboldt County, California. His HIE, the North Coast Health Information Network (NCHIN), expanded its mission as the North Coast Health Improvement and Information Network (NCHIIN) in 2015, launching cross-sector data exchange services the following year. 

What does NCHIIN’s experience as a provider of both HIE and CIE services have to teach us? As public health leaders, what are the opportunities and challenges we should consider with a community data sharing approach?

A Brief Case Study from Humboldt County

Humboldt County, situated near California’s border with Oregon, is blanketed with redwood forests that march down to the ocean. With a population of approximately 136,000 people, the county shares key economic and social characteristics with rural areas across the country, such as significant health and healthcare challenges that include high poverty and death rates and primary care and behavioral health provider shortages.

Love was serving as the CEO of the local independent practice association (IPA) in 2009 when the HITECH Act as part of ARRA spotlighted the importance of HIE to link electronic health records (EHRs), and he founded NCHIIN in response to this federal policy. “The IPA had sophisticated IT skills and relationships with most of the practices in the county, and the leadership saw the potential clinical benefits. We were able to leverage all of that to launch NCHIIN,” said Love. The expansion of Medicaid in California with the passage of the Affordable Care Act added further momentum, significantly increasing the insured population in the county and helping stabilize the finances of provider organizations.

At the same time, Love and other leaders such as their COO at the time, Rosemary Den Ouden (now CEO), knew that healthcare did not have a monopoly on health, and their community needed to further come together to address challenges such as the opioid crisis. NCHIIN’s multistakeholder approach to governance and trust-building — convening several community “tables” for discovery and planning — could be further expanded. Grants from the Robert Wood Johnson Foundation (RWJF) and others supported critical thinking about local needs and cross-sector, data-informed service models. In 2015, with all the signs they needed to act, the organization changed its name and organizational identity, offering CIE services and serving as a convenor for community health initiatives in the following years. They initiated data sharing between the health and social sectors, facilitated cross-sector case management, and implemented a multipurpose consent for CIE. 

Today, NCHIIN’s CIE network partners include WIC, school-based wellness services, the local agency on aging, nonprofit clinics, and disability services. They launched a care coordination and referrals platform across medical, behavioral, and social health in 2021, and the network now includes 15 unique programs, with many more in the onboarding pipeline. NCHIIN’s HIE currently has over 55 interfaces with most major healthcare endpoints in the region and over 300,000 lives in its master patient index, and it averages over two million message transactions monthly. NCHIIN continues to build interoperability between its HIE and CIE networks.

For a decade, this small community has been a testing ground for innovative approaches to collaboration across sectors, demonstrating leadership to respond holistically to emerging local needs in alignment with national best practices rather than being driven by a compliance mindset for specific state or federal programs. Now CEO Den Ouden looks to the future with hope and optimism that “through the HIE and now the CIE infrastructure, our community has the tools needed to coordinate effective care across the delivery systems. Having a tool to manage the care coordination is critical when humans are helping humans achieve their highest health and well-being possible.” 

Medicaid Innovation

If Love and Den Ouden read the tea leaves nearly a decade ago that cross-sector collaboration was an imperative, today the message is being blasted from the rooftops. Value-based care models are pushing healthcare upstream, forcing a reckoning with social drivers of health and incentivizing collaboration across sectors. Medicaid, particularly in states with ambitious new waivers and benefits such as California and New York, is leading this transformative charge. This is not surprising, given the multifaceted nature of Medicaid member needs and the fragmented systems that serve them: whole-person care approaches promise dramatic improvements in both experience and outcomes for Medicaid members.

California’s massive Medicaid overhaul — CalAIM — needs integrated data exchange across sectors to be successful with services such as enhanced care management, community supports, integrated behavioral health, and population health more broadly. CalAIM has specific data exchange requirements, including for participation in the state’s new Data Exchange Framework (DxF), which is based on a vision of integrating healthcare services, social services, and public health through public-private partnerships. In New York, the 1115 Waiver being finalized between the state and CMS creates Social Care Networks (SCNs), new aggregators of social and human services providers, as key pillars in the Medicaid delivery system. The state will pilot risk- and value-based contracting with SCNs, and they will need the data infrastructure to support it.

In California, HIEs beyond NCHIIN are responding to the needs of their customers in this new landscape. In 2022, the HIE San Diego Health Connect became a subsidiary of the region’s Community Information Exchange, 211 San Diego/CIE — perhaps the leading CIE in the country. They are now aligning their respective data sets and tools. In Santa Cruz, the longstanding Santa Cruz Health Information Organization (SCHIO) changed its name to the Serving Communities Health Information Organization (SCHIO) and has implemented technology platforms for both cross-sector care management and referrals alongside its core clinical data exchange offerings. 

Why Cross-Sector Data-Sharing Is Hard

With existing clinical HIEs largely staying on the sidelines of cross-sector collaboration and data exchange over the past several years, categories of new convenors and service providers have emerged. In the technology space, referrals platforms that include or link to social service directories; care management tools oriented toward shared care planning across distributed, multisector care teams; and CIEs that facilitate clinical/social data sharing and typically also include referrals and/or care management functionality. Policy-makers are now shaping the market to drive the integration of this new social data ecosystem to support their population health priorities, begging the question: why aren’t HIEs and other clinical data-sharing networks lining up to lead the way? 

Three reasons why this is so hard stand out, relating to HIE data, services, and customers. 

1. Consent for data sharing. Most HIEs in the U.S. operate with an opt-out consent model for the exchange of health data governed by HIPAA, meaning that an individual’s data is shared unless they opt out. This “HIPAA tent” is a safe and comfortable place for HIEs and other data exchange networks, and HIEs have not shown a willingness to change their core consent model in part due to the perceived operational burden. Because cross-sector collaboration requires venturing out beyond the HIPAA tent to exchange data with social service, housing, and other providers who are not “covered entities” under HIPAA, HIEs remain unable to broadly support many emerging use cases prioritized by policy-makers. 

2. Services model. The core service of an HIE or similar data-sharing network is providing access to historical clinical data (perhaps as recent as an event notification that arrived five seconds ago). Whether in an HIE portal or integrated into a provider’s EHR, this is a “read-only” user experience. In contrast, CIEs and related services offer “read-and-write access” to collaboration tools such as referrals and care management platforms across organizations and sectors. Some HIEs are getting their toes wet by integrating social data — housing data is typically the first step — but the market is looking for data-rich collaboration tools for increasingly distributed care teams. This would represent a complete change in service model for most HIEs. 

3. Customer relations. HIE boards are composed of healthcare leaders. Healthcare CEOs and CIOs, who often sit on HIE boards, may not prioritize or feel equipped to lead an organization into community health collaboration. Diluting their decision-making authority may be another concern, especially if their organizations are the primary users or funders of HIE services. Thus, while new committees may be established or individuals invited into decision-making forums, distributing power across sectors would represent a fundamental departure for HIEs that would recenter their organizations.

While there are some HIE-specific elements of these challenges, they represent larger issues for the entire healthcare ecosystem in which HIEs operate. 

Cross-Sector Data Sharing Is Possible — and HIEs Can Play a Central Role

What we have today, then, even in California, is a robust clinical data-sharing ecosystem and an emerging social data ecosystem, with very specific and limited points of connection between them. Nevertheless, HIEs remain particularly well-positioned to follow NCHIIN’s lead and serve as a key part of the solution in their communities for the following reasons, as can be seen with our trio of data, services, and customer relations.

Data. The evidence is growing that multipurpose consent enabling health and community information exchange is feasible. Some states such as New York have a long tradition of obtaining consent for clinical data-sharing, which will likely be extended to cross-sector use cases in the upcoming Medicaid waiver. In California, a recently completed pilot called ASCMII (pronounced “ask me”) with HIEs operating in three distinct regions of the state found that 85 percent of individuals agreed to their data being shared across sectors, and digital tools made the process reasonably efficient. With further improvements, the value of obtaining multipurpose consent may begin to outweigh the drawbacks. NCHIIN gathers a multipurpose consent for individuals served in its care coordination platform today, and data flows from its HIE into this service (e.g., for event notifications). 

Services Model. Policy-makers increasingly want to see clinical and social data ecosystems made interoperable to support cross-sector collaboration. HIEs have a tremendous opportunity to offer this data integration and the interactive “read-and-write” care coordination platforms that distributed care teams need. In the past, HIEs stayed in the “read-only” historical data lane because their customers documented within EHRs and didn’t want to navigate to another system. Today, scalable methods exist to embed third-party applications within EHRs, and many social services providers are willing to log in to a shared community resource to collaborate. This path provides HIEs the opportunity to move up the value chain, as seen with NCHIIN, as clinical data exchange becomes increasingly commodified. 

Client Relations. Community, regional, and small state-based HIEs cut their teeth on stakeholder engagement and transparent governance. The lessons, infrastructure, and trust developed by HIEs for clinical data exchange represent a strong foundation on which to build partnerships with organizations from other sectors. While many communities have other forums to house community health initiatives, the CIE component of cross-sector collaboration is a natural extension for many HIEs. In the midst of its expansion to CIE, NCHIIN reconceptualized its client as a diverse community coalition. Other HIEs can follow a similar process, examining and reframing who they serve, and then inviting this coalition into the governance structure to share power. Doing so will naturally lead to a rethinking of the organization’s identity and position it to deliver unique value.

Establishing vibrant ecosystems for cross-sector collaboration is hard work that requires hard decisions. By building on existing strengths, such as the experience and assets of HIEs, courageous leaders can generate transformative impact for the communities they serve. 

Mark Elson is CEO of Intrepid Ascent, a consulting firm leading community collaboration for health. Each year Intrepid Ascent builds new connections between more than 500 partners, supporting coordinated, equitable health and social services for millions of people. With an interdisciplinary background in anthropology, technology, and policy, Mark applies integrated local approaches to global challenges.

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