Developing Partnerships to Expand Patient-Centered Data Sharing: A Collaborative Forum on California CIE and HIE
California health systems are transforming their approach to care by confronting inefficiencies and health inequities in their communities with increased care coordination and services that address the social determinants of health (SDOH). A fundamental component of this work is patient-centered data sharing, which captures critical information like a person’s medical history, care team providers, social risk factors, care preferences and more, to effectively deliver health and social services.
Patient-centered data sharing networks are emerging across California, commonly coined as “Community Information Exchanges” (CIEs) after the success of the 2-1-1 San Diego network concept. CIEs are driven by anti-racism and equity principles to coordinate social services for a proactive care approach that meets a patient’s SDOH-related needs. They are defined by their community-based partner networks rather than technology platforms, but include shared language, integrated technology, and a resource database.
With the rise of new social service infrastructure, like CIEs and social referral platforms, collaboration with health information exchanges (HIEs) is essential to facilitate comprehensive cross-sector data exchange and ultimately, improve patient and community outcomes.
On August 16th, Aliados Health and Connecting for Better Health (C4BH) invited CIE and HIE experts from California and across the country to discuss lessons learned from working together to bridge the gap between health and community data exchange. The conversation identified five key takeaways to advance infrastructure and partnerships between CIE and HIE for patient-centered data sharing:
1. Though they work towards similar goals, there are philosophical differences between CIEs and HIEs. While HIEs traditionally allow health providers and patients to securely access and share a patient’s electronic medical information, CIEs are community-grounded and center a patient’s SDOH-related needs across local providers. Together, they can promote data exchange across health providers, county agencies, and community-based organizations (CBOs) to address health and community needs.
2. CIEs and HIEs should advocate for, and work towards, interoperability among systems to improve patient experience and access to information. Interoperability is critical to provide real-time access to information and reduce repetitive data collection that is burdensome for individuals and providers. For example, sharing data collected by one social service organization with others can reduce the amount information that others need to collect. This prioritizes time for patient care and avoids patient frustration in providing the same information multiple times, as well as supports trauma-informed data collection by limiting the need for patients to repeatedly disclose sensitive information.
In an example of interoperability stakeholder engagement, MiHIN initiated an interoperability pledge among several social care referral platforms (a component of CIE) to enable a more collaborative and connected network. California is also currently implementing the Data Exchange Framework and Data Sharing Agreement across most health care organizations in the state to promote interoperability, which will support local CIE and HIE efforts.
3. Health sector partners should invest in the financial sustainability of CIEs while allowing CIEs to remain grounded in the community with shared governance among partners. Preliminary research by Health Leads found that the majority of financial investments in CIEs currently come from federal and local government agencies compared to health plans and health systems despite the shared benefits and projected cost savings in patient care. A potential funding strategy for CIEs could include a three-way split between government agencies, health systems, and health plans to ensure CIE sustainability.
There was also agreement that investments in community engagement and shared governance are necessary to support sustained community uptake of CIEs. With design informed by local needs and community partners, CIE infrastructure can and should look different across communities.
4. CBOs need targeted investments in technical infrastructure and technical assistance to successfully connect with CIEs. The strength of CIEs lies in network participation and utilization among community partners, but this is constrained by many CBOs lacking both electronic record systems and the trained staff to engage in data exchange. Significant funding is needed to not only equip CBOs with data systems, but also provide staff training and technical assistance are to ensure CBOs have the knowledge and capacity to effectively connect with CIEs. Leveraging partnerships with HIEs may support addressing this high-need area through collaboration and shared technology development.
5. In addition to offering abundant use cases for both health and social service providers, CIEs and HIEs will benefit from partnering together to advance their network reach and workflows. As California continues to implement CalAIM and other Medi-Cal transformations, champions of local CIE and HIE initiatives can drive new use cases to support health and social service providers. For example, data exchange among CIEs and HIEs can give social service organizations access to certain health information to help determine eligibility for programs while health providers can benefit from seeing externally identified SDOH risk factors and social services their patient is receiving. All types of local providers would benefit from viewing the patient’s full care team to coordinate services and inform care decisions.
To expand network reach within communities, tailoring access for different types of organizations to limit the viewable information within CIE and HIE platforms is achievable. This can make patient-centered data more accessible while also protecting patient information and building trust in systems and between patients, health providers, and social service organizations.
Additionally, CIE and HIE partnerships to share acquired knowledge can advance organizational practices to build the right health and community data infrastructure, such as with insights into community stakeholder engagement and interoperability lessons learned from the early years of electronic health record system implementation.
Patient-centered data is essential to transform California health systems to improve patient and community health outcomes. Partnerships between CIEs and HIEs are the key to drive this work forward with continued patient-centered conversations and collaboration focused on community needs.
This Aliados Health project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under cooperative agreement number U86CS45894, Health Center Controlled Networks, for $665,817. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
To find out more about Aliados Health and its Health Center Control Network please visit: https://aliadoshealth.org/population-health/hrsa-health-center-controlled-network/