Report: U.S. infrastructure for sharing health and social data needed

The United States needs a strategic national vision, defined technology standards and significant resources to support the integration of healthcare and social care data in order to improve health outcomes and reduce disparities.

That’s among the findings of a new report from the National Academies of Sciences, Engineering and Medicine on how to integrate patients’ social needs into healthcare delivery.

“Interoperability and data sharing between healthcare and social care are hampered by the lack of infrastructure, data standards and modern technology architecture shared between and among organizations,” states the report.

To address the problem, the authors call for the development of a digital infrastructure that is interoperable between healthcare and social care organizations, as well as the resources to finance the integration of healthcare and social care.

“Billions of dollars in federal resources spurred the digitization of healthcare through the widespread adoption of electronic health records and interoperability,” adds the report. “Social care has not benefited from the same resources and policy attention as has the healthcare sector, and it lags far behind in digitization.”

To remedy the situation, the authors contend that the federal government must establish a “21st-century social care digital infrastructure” in the same way that the Health Information and Technology for Economic and Clinical Health Act of 2009 made EHRs ubiquitous.

In addition, the report calls on federal agencies to “identify and deploy policies and resources to build the internal capacity necessary for social care organizations and consumers to interoperate and interact with each other and the healthcare system.”

Towards that end, the authors recommend that federal agencies take the following actions:

  • The Department of Health and Human Services should work with the private sector to disseminate educational tools and guidance on the data security and privacy issues that arise when collecting and sharing personally identifiable information.
  • The Federal Health Information Technology Coordinating Committee should facilitate data sharing at the community level across diverse domains such as healthcare, housing, and education so as to support social care and healthcare integration.
  • The Office of the National Coordinator for Health IT should support states and regions to identify appropriate interoperable platforms for their communities, based on open standards and a modern technical architecture that supports flexible interfaces to allow the health and social care systems and consumers to share the structured data necessary for care coordination.

Former National Coordinator for HIT Karen DeSalvo, MD, professor of medicine at The University of Texas at Austin’s Dell Medical School and a member of the committee that wrote the report, makes the case that data and digital tools—in particular—have the potential to meaningfully affect social care integration into healthcare.

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Karen DeSalvo, MD

“We, the committee, felt that in the 21st century you couldn’t do this work without leveraging data and digital tools—that prompted us to include a whole chapter on that topic,” says DeSalvo. “We have a couple of examples in the report about how technology can support things like alignment in the community and also advocacy. My own experience in doing a lot of this work—before the advent of technology—is it’s difficult to do unless you have an interoperable infrastructure and data to see where the needs are the greatest.”

DeSalvo and her colleagues on the committee contend that by leveraging data and digital tools not only will healthcare be improved but also efforts to better identify social risks and address social needs.

“There has become a largely untapped opportunity to better incorporate data from multiple sources beyond the EHR to establish a broader view of the health status of individuals and communities, inclusive of health-related social factors,” states the report.

The authors point out that “eligibility and enrollment files for social services programs and experiences with care and services all may contribute to creating a more complete picture of individuals’ health needs and drivers” as well as “other data, including community-level information such as hardship indices or information on the availability of healthy food or public transportation.”

According to DeSalvo, the hosting of social needs data doesn’t have to take place in EHR systems.

“There are other choices that we have,” DeSalvo concludes. “As we’re building this bridging system and these partnerships between healthcare and social care, I think we all need to rethink where the center of the universe is on data hosting. It may not be in EHRs, but perhaps may do better in a health information exchange in the community or another trusted third party.”

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