Data Standards, Community Stewardship Key for SDOH Data Exchange

Data standards and community stewardship are critical elements for social determinants of health (SDOH) data exchange, according to Greg Bloom, strategic advisor on community resources and engagement for the Gravity Project, a community-led HL7 Fast Healthcare Interoperability Resources (FHIR) Accelerator.

The Gravity Project worked with healthcare stakeholders such as health IT vendors, payers, providers, philanthropies, and federal and state government officials to develop a foundational elements framework for SDOH information exchange.

Bloom emphasized that the framework is not a one-size-fits-all approach. Instead, it's a set of conceptual guidelines that can help shape the planning, design, implementation, and evaluation of initiatives to facilitate social information exchange.

"These foundational elements include community readiness and stewardship, mission and purpose, values and principles, policy, legal, finance, measurement and evaluation, implementation services, technical infrastructure and data standards, user support and learning networks, and governance," he noted during an ONC SDOH information exchange webinar on March 29.

Community readiness and stewardship are crucial to any social information exchange initiative, as the landscape of social services is often particular to local contexts, Bloom said.

"For this work to be successful, it needs to reflect the priorities of a given community and involve stakeholders from that community in processes of design and stewardship," he explained. "This takes time and energy. It needs to be engaged with intentionally."

He also noted that outlining the mission and purpose of any information exchange initiative from the start is key to a project's success.  

"Any initiative to achieve system change is best undertaken by first clearly stating the mission and intended purpose before the initiative through which all stakeholders agree," Bloom said. "By clearly articulating this mission, you can begin to create a shared framework to make that systems change happen."

Next, organizations must present clear values and principles to achieve systems change and facilitate information exchange across contexts.

"Values and principles articulate what success looks like," Bloom said. "They are presumably simple statements with which everyone can agree, but initiatives might easily lose their community's trust without such simple statements."

The next foundational element of an SDOH exchange is financing related to developing and maintaining the data exchange infrastructure.

"The question is not only how these initiatives can be financed, but also how they can be financed in accordance with communities' stated values and principles," he added.

Bloom also emphasized the importance of implementation services in successful social information exchange.

"We observe that an implementation strategy takes into careful consideration the challenges faced by our community, and the implementation strategy will establish the means of meeting those challenges and meeting users' needs," he said.

For example, if a community is struggling with too many software systems that don't interact with each other, an implementation strategy that deploys a new software system might not be sound, Bloom said.

Technical infrastructure and data standards are also integral to a successful information exchange project.

Bloom said that facilitating information exchange across healthcare and social care sectors requires technical infrastructure such as data standards or middleware to support interoperability across organizations using many different software systems.  

And after that, stakeholders need to consider the legal aspects of data sharing.

"Those familiar with health information exchange are very familiar with the challenges associated with HIPAA compliance," Bloom said. "In this context, we also have the additional challenges of aligning clinical providers with HIPAA regulatory framework with stakeholders in other sectors like education that might have FERPA as a regulatory framework."

"This challenge of aligning regulatory frameworks is no small one," he said. "It's in the process of establishing legal agreements that will work towards that harmonization."

Bloom said that the Gravity Project also recognizes the element of policy advocacy as a critical component of SDOH information exchange projects. The levers of policymakers can help facilitate information exchange, he noted. Additionally, information exchange results can help inform data-driven policy-making.

"The ability to monitor, collect data, and make decisions based on that data is a critical component of these processes," Bloom said.

He also said that the aspect of evaluation and measurement must reflect the principles and values and stated purpose and mission of the initiative.

"It is important to involve community stakeholders and especially the people most impacted by that work in designing measurement and evaluation mechanisms," Bloom explained.

Lastly, Bloom noted governance as a foundational element of SDOH data exchange.

"We found in the dialogue with technical experts that what are often framed as technology or data problems are actually questions of institutional governance," he said.

These questions include: Who gets to be involved in this process? How are they represented? How are activities monitored? What happens when there are conflicts?

"These are all questions that ought to be answered in every phase of the life cycle of an information exchange initiative," Bloom emphasized. "A successful project is always a well-governed project."