How HHS Can Use Social Data for Better Healthcare

The social determinants of health (SDOH)  — which include income, education, housing, environment, and food availability — are attracting increasing attention across the health care industry and in the U.S. Department of Health and Human Services (HHS).

Public health experts have realized that a person’s ZIP code can be just as important as his or her genetic code in predicting health risks. Simultaneously, HHS has identified social interventions as an important part of the Department’s mission. HHS Secretary Alex Azar has said that the “social determinants would be important to HHS even if all we did was healthcare services…but in our very name and structure, we are set up to think about all the needs of vulnerable Americans, not just their healthcare needs.”

In October, the HHS Office of the Chief Technology Officer (CTO) and the independent nonprofit Center for Open Data Enterprise (CODE) co-hosted the Roundtable on Leveraging Data on the Social Determinants of Health. The roundtable brought together more than 80 experts from inside and outside of government to explore new strategies for combining SDOH data with research, clinical, and public health data, and to help develop a new data-driven paradigm for socially focused healthcare. Today, CODE published its independent report on the roundtable with recommendations for public-private collaboration to advance that new paradigm.

As Assistant Secretary for Health Adm. Brett Giroir says in the foreword to the CODE report, the need for a new approach is urgent. “Our healthcare spending is tremendously high, accounting for almost 18% of our GNP and potentially going up to $6 trillion by 2027. And we’re not getting our money’s worth for those expenditures,” he writes. “America needs a new approach to healthcare, and work on the social determinants of health can be the foundation of that approach.”

The report describes many ways that different organizations are using SDOH data and illustrates them with a dozen case studies. Healthcare providers, for example, are collecting SDOH data in clinical settings to improve patient care. Policymakers are using population-wide SDOH data to target healthcare funding. And initiatives such as Healthy People 2020 and the Gravity Project are expanding the use of SDOH data for many applications.

CODE’s report calls for a national SDOH Data Strategy that can provide the policy framework to improve interoperability and data access, address privacy concerns, and broadly set the agenda for improved use of SDOH data. Based on input from Roundtable participants and CODE’s own research, the report includes several specific recommendations that such a strategy could implement. Key recommendations include:

• Improve and Align Open Source Assessment Tools. Many SDOH screening tools are too expensive for community-based organizations (CBOs), smaller health clinics, and other stakeholders to use. The report recommends developing a centralized repository of open source screening tools and social screening platforms, such as the PRAPARE Assessment tool.
• Adopt Data Standards and Definitions. The lack of data standards and definitions for SDOH causes problems in data sharing, interoperability, and coordination of care. HHS and its partners could help increase support for national initiatives like the Gravity Project to expand, accelerate, and align workaround SDOH data standards.
• Develop a Data Governance Body. A wide array of stakeholders both within and outside the healthcare sector generate and use SDOH data. A data governance body would help these diverse stakeholders implement a nationwide SDOH Data Strategy by coordinating policy development, data sharing, standards development, and new programs.
• Improve Financial Alignment for Providers and CBOs. Many clinicians recognize the importance of gathering SDOH data and referring patients to CBOs, but the payment structure is poorly aligned to incentivize this model. The report recommends improving financial alignment through improved medical billing codes, such as Z Codes and CMS ICD-10 payment codes, and generally improving SDOH information sharing across payers, providers, and CBOs.
• Empower and Strengthen CBO Data-Gathering Capacity. CBOs are critical providers of SDOH data and can track the impact of social services that patients receive. However, they often lack the resources to keep up with data collection as they take on new clients. Roundtable participants suggested utilizing philanthropic dollars and other sources of revenue to provide additional resources and technical support for CBOs.
• Develop Hyper-Local Snapshots of Communities. Many healthcare providers and private-sector companies face challenges in gathering geographically granular and representative data for the communities they serve. The report recommends that HHS create hyper-local snapshots of social determinants of health at the ZIP Code level. This recommendation builds on the work of initiatives like the S. Small-area Life Expectancy Estimates Project, the product of a partnership between the Robert Wood Johnson Foundation and the National Association for Public Health Statistics and Information Systems (NAPHSIS).
• Create State-Level SDOH Strategy Toolkits. States often face difficulties in applying funding from the federal government to build out comprehensive SDOH strategies. HHS and its partners could create state-level toolkits and resources to help state agencies develop and implement such strategies.

CODE’s report comes at a time of increased momentum for the use of social determinants data. The Social Determinants Accelerator Act, proposed by Rep. Cheri Bustos, D-Ill., this year, aims to help states better measure the outcomes of their social determinants investments by providing planning grants and technical assistance. Moreover, the National Library of Medicine recently implemented the first free FHIR-enabled questionnaire, announced at the roundtable by former White House CTO Aneesh Chopra, to gauge the social determinants of health in a clinical setting. FHIR, which stands for Fast Healthcare Interoperability Resources, is a standard that enables quick exchange of healthcare information available on electronic health records.

At the Roundtable, former Acting Assistant Secretary for Health Dr. Karen DeSalvo noted that “SDOH Data is bigger than a single sector and will require ongoing collaboration between the public and private sectors. It will also require the involvement of CBOs that have access to different, more granular data sources and have their own goals for data use.” She described principles that can guide the development of a better SDOH data culture, including building open ecosystems, engaging with partners strategically, and keeping the end in mind. New partnerships between healthcare providers and CBOs, collaborative efforts to provide healthcare to rural communities, and other initiatives are showing how stakeholders can work together to build a new, data-driven paradigm for socially focused healthcare.

 Joel Gurin is President, and Paul Kuhne is Roundtables Program Manager, at the Center for Open Data Enterprise (CODE). CODE’s report is available online here.