Navigating Social Determinants of Health Data Exchange

Insights from ONC’s SDOH Information Exchange Learning Forum

By Meley Gebresellassie and Jawanna Henry, ONC
LinkedIn: JaWanna Henry, MPH, MCHES
LinkedIn: ONC

Last year, ONC wrapped up the SDOH Information Exchange Learning Forum, a series of webinars focused on social determinants of health (SDOH) information exchange. The sessions are part of our ongoing work to engage and empower communities to advance SDOH interoperability consistent with the Biden-Harris Administration’s actions to improve health and well-being by addressing SDOH. The sessions built upon earlier ONC-supported activities including the development of an SDOH Information Exchange Toolkit.

Over the course of nine webinars, the learning forum brought together more than 2,400 people including healthcare providers, community-based organizations (CBO), government agencies, payers, health information exchange (HIE) networks, digital platform developers, innovators, associations, academia, philanthropic groups, and more. Participants explored the foundational elements articulated in the toolkit, heard from champions in the field, and shared lessons learned, promising practices, and challenges related to exchanging SDOH data.

Here are a few themes that stood out over the course of the webinars:

• Build community stewardship: SDOH information exchange initiatives require time and investment to build trust and align partners—especially CBOs—with the mission, purpose, and decision-making processes of the initiative. Notably, CBOs have limited financial, human, and technical capacity and need additional financial and technical support to address these areas to effectively engage.
• Co-design SDOH information exchange governance: It is critical to engage a diverse set of representative partners; specifically, CBOs and individuals with lived experiences in the design of governance structures and decision-making. Some entities may face challenges putting these principles into action, particularly when expanding to both health and SDOH partners and navigating potential power imbalances.
• Information privacy, security, and individual consent are challenging topics for CBOs: CBOs need support to understand how best to apply legal frameworks, policies, and varied consent models. Additionally, participants around the country expressed growing concern about the privacy of SDOH information. For example, one type of perceived risk relates to the use of aggregated anonymized data for algorithm development that can be susceptible to bias and inequitable outcomes. Additional guidance may prevent the potential of varying interpretations that can become a barrier to interoperability and scaling data exchange initiatives across communities.
• Support vendor-agnostic approaches to SDOH information exchange: Participants emphasized the need for a technical infrastructure to support SDOH information exchange with vendor-agnostic approaches. Experts in the field are focused on integrating current workflows and systems used by CBOs and other partners through a platform that is standards-based and vendor-agnostic to enable interoperability and make data accessible, shareable, and reusable. In some regions and states, leveraging state and federal investments in HIE infrastructure may help facilitate this approach.
• Increase readiness for FHIR®: The use of Health Level 7 (HL7®) Fast Healthcare Interoperability Resources (FHIR®) can support interoperable SDOH information exchange. However, health care and SDOH partners vary in their FHIR readiness and require increased education and awareness of FHIR’s value for social care data integration.
• Expand social sector engagement in information exchange standards development: Learning forum participants raised the need for greater alignment between health care-centric standards with social sectors’ needs and perspectives. Limited representation exists for social sector perspectives in the process of standardizing protocols for SDOH information exchange. An exception is the HL7® Gravity Project, which works closely with CBOs in the design, publication, and testing of data standards.

The insights from the learning forum are opportunities for partners to continue engaging and collaborating to advance SDOH information exchange. ONC intends to continue our engagement as well to further understand the challenges of SDOH information exchange at the state level and what additional resources may be needed.

Did you miss out on the Learning Forum webinars? Review the slides and recordings on HealthIT.gov, explore the foundational elements found in the toolkit and track future and upcoming events. Are you already using the SDOH toolkit? Tell us how it’s going by emailing us at ONCSDOHLearningForum@hhs.gov.

This article was originally published on the Health IT Buzz and is syndicated here with permission.