Recommendations for Policymakers Looking to Address the Social Determinants of Health Improving SDOH Health Data

As SDOH data becomes more widely adopted throughout the continuum of care, HHS and its partners can play an increasingly important coordinating role to help maximize healthy outcomes for patients. To address these issues, policymakers can define and standardize data, build out a sustainable infrastructure along the data management lifecycle, and empower local and state decision makers.

Further, HHS can develop an SDOH Data Strategy that comprehensively maps the space and helps coordinate action among different stakeholders. A comprehensive strategy could improve interoperability and data access, address privacy concerns, and broadly set the agenda for improved use of SDOH data. Each of the following sections includes recommendations that could be a part of that broader SDOH Data Strategy.

These recommendations are based on input from participants at the Roundtable on Leveraging Data on the Social Determinants of Health, additional research, and input from other stakeholders. They do not represent a consensus, and do not represent the views of HHS or any other government agency.

Define and Standardize SDOH Data

Data standards and commonly agreed upon definitions serve as the foundation for *data interoperability *, privacy and protection, and ethical data use, including the principle of  *data minimization *. Roundtable participants proposed a series of recommendations to ensure that SDOH data is standardized and streamlined for use as more and more data is gathered about financial, housing, environmental, and contextual indicators.

Improve and Align Open Source Assessment Tools

The Problem: Many of the emerging SDOH screening assessment tools and predictive analytics platforms are commercial products that are not financially accessible to community based organizations (*CBOs *), smaller health clinics, and other key stakeholders. While open source screening tools like PRAPARE have been adopted, little coordination exists between the different providers who use open source screening assessments.

Solution HHS should develop a centralized repository of open source assessment tools and social screening platforms to identify best practices and build consensus.
Impact Enable centralized use of key screening tools and promote coordinated open source development in the SDOH data space.
Resources Needed Dedicated funds to review existing platforms, staff resources, technology expertise to develop integrated tools, and federal oversight.
Stakeholders Commercial SDOH vendors, patient advocacy groups, CMMI, healthcare providers and payers, state governments, federal government, civil society, CBOs
Policy Changes Updates to the CMS and ONC rules on APIs and interoperability and patient access.
Immediate Actions
  • Develop a working group to identify the variety of open source SDOH screening tools (potentially work with the Gravity Project).
  • Create comprehensive inventory of existing tools, similar to the Gravity Project, and the wider work of SIREN, which oversees Gravity.
  • Aggregate open source assessment tools into a single repository to be hosted on HHS website.
Long-Term Goals Develop a single, customizable, open source SDOH screening assessment that can be adopted across healthcare settings and accessed by patients.

Adopt Data Standards and Definitions

The Problem: The lack of data standards and definitions for SDOH data has led to challenges in data sharing, interoperability, and improved coordination of care. As stakeholders expand population health interventions and programs, increasing amounts of data will need to be shared and integrated across platforms to gain greater insights from this data.

Solution Increase funding and support from federal and state governments to bolster national initiatives, such as the Gravity Project, to expand, accelerate, and align work around SDOH data standards.
Impact Develop a national consensus around SDOH Data standards and definitions for better alignment and interoperability.
Resources Needed Additional government funding for standards collaboratives, staff resources to oversee collaboratives, and incentives for adoption.
Stakeholders Healthcare payers, providers, CBOs, federal government
Policy Changes Updating the CMS health interoperability rules and adjusting the ICD Codes.
Immediate Actions
  • Review successes and hurdles faced by the Gravity Project to develop new working group models.
  • Review the capabilities of developing a health data standards collaborative.
  • Develop a small working group of private and public stakeholders to pilot updated definitions in clinical settings.
Long-Term Goals Promote the use of standardized definitions of SDOH data and realign the healthcare space towards addressing holistic care.

 Develop A Data Governance Body

The Problem: SDOH data is generated and used by a wide array of stakeholders both within and outside the healthcare sector. This multitude of actors can range from smaller community food banks that are distributing nutritious goods to clients to a larger healthcare payer that is tracking value-based care for its members across different states. This can pose a challenge to coordinating policy, data sharing, and new programs.

Solution Develop a data governance body to help coordinate working groups and standards development, and to set policy, around SDOH data.
Impact Better align SDOH data work to prevent the duplication of efforts and increase consistency of SDOH data development in the United States.
Resources Needed HHS guidance and leadership for the data governance body, funding for a dedicated team to oversee governance, funding for sustainability.
Stakeholders Federal government, state and local health officials, healthcare payers and providers, patients and community members, ethicists, CBOs, existing SDOH Data working groups
Policy Changes Potential development of a national SDOH Data Strategy and adjustments to the Trusted Exchange Framework and Common Agreement (TEFCA).
Immediate Actions
  • Complete initial ecosystem and stakeholder analysis of ongoing efforts in the SDOH data space.
  • Convene a working group that can coordinate efforts among these various bodies.
Long-Term Goals Create a long-term SDOH Data Strategy that will provide guidance on standards, definitions, privacy, financial alignment, and policy development across sectors.

Create a Sustainable Infrastructure for SDOH Data

As value-based care and population health are implemented across the healthcare system, more and more stakeholders will engage in the collection, aggregation, and sharing of SDOH data. This will require increasing access to data infrastructure -such as online data storage, the integration of SDOH data into EHRs, and the ability for small and larger stakeholders alike to streamline data collection.

Improve Financial Alignment for Payers, Providers, and CBOs

The Problem: The clinical setting represents the primary forum to gather individual-level data on social risk factors and other environmental conditions. Despite the importance of gathering these metrics, many clinicians lack access to plugins to support this data collection and have poor financial incentives to work more closely with CBOs and other service providers to track the outcomes of these interventions.

Solution Realign the payment structure across providers and CBOs to improve financial alignment and adoption of SDOH data in a clinical setting.
Impact Transform healthcare by advancing from responsive cures to preventive treatment.
Resources Needed Better infrastructure, increased monetary resources, involvement from the National Committee for Quality Assurance (NCQA) and National Quality Forum (NQF)
Stakeholders CMS, hospitals, physicians, plans, CBOs, employers, patients
Policy Changes Improving payment alignment to facilitate the sharing of information across providers, payers, and CBOs. Also, adjusting the quality measures in the CMS Measure Management System and providing more implementation support for the Federal Health IT Strategic Plan.
Immediate Actions
  • Create a national task force to establish SDOH outcome measures.
  • Update and increase ICD-10 Codes and Z Codes for entering patient conditions.
  • Achieve EHR certification for SDOH data.
  • Leverage braided funding models at the state level to increase local adoption
Long-Term Goals Influence behavior by tying payment to SDOH outcomes and payment.

Empower and Strengthen CBO Data Capacity

The Problem: CBOs are critical providers of SDOH data and document key services that are administered to growing numbers of patients. However, many CBOs lack the measurement capacity or storage infrastructure to oversee the influx of new clients. Important information such as numbers of bags of food distributed or the level of temporary homelessness helps healthcare providers better track outcomes and close the feedback loop for care coordination.

Solution Provide additional resources and technical support for CBOs to help expand their data gathering capacity.
Impact Create a sustainable infrastructure to scale the use of SDOH in healthcare.
Resources Needed Foundation and philanthropic funding to CBOs, staff resources and training materials for CBO staff, online toolkits
Stakeholders Healthcare providers, private sector companies, foundations, CBOs, data scientists.
Policy Changes Including language around community data capacity in the Federal HIT Strategic Plan.
Immediate Actions
  • Identify sponsoring philanthropies to lead strategy for CBO Data Capacity.
  • Develop an RFP to release to CBOs to expand data capacity.
  • Identify foundations and groups to provide small-scale grants.
  • Potentially pilot program with CMMI-led AHC zones.
Long-Term Goals Increase the capacity of CBOs to better collect, store, and share data about patients they’re serving.

Support Local and State-based Decision-makers

A large portion of healthcare delivery takes place at the local level through health clinics, small providers, and community health centers. HHS can play a unique role in expanding the resources and representative data available to state policymakers and practitioners to enhance policy decisions and funding allocations. This is best achieved by developing granular, representative snapshots of communities and creating toolkits for state officials seeking to improve their SDOH strategies.

Develop Hyper-Local Snapshots of Communities

The Problem: Many healthcare providers and private sector companies face challenges in gathering geographically granular and representative data for the communities they serve. Many providers cannot administer better value-based care without access to ZIP Code level data, such as housing, transportation, or food indicators. They could also improve decisions with access to county-level federal funding overviews.

Solution Create hyper-local, small area SDOH estimates at the ZIP Code level.
Impact Enable better distribution of resources and improved understanding and trust among local communities.
Resources Needed Increased data collection abilities through APIs and better data integration, funding for cloud-based platforms, and staff resources to oversee the data collection.
Stakeholders U.S. Census Bureau, CBOs, Healthcare Providers, HHS CTO Office, State health agencies.
Policy Changes Update Federal Health IT Strategy; adjust HIPAA privacy and security rule for SDOH data gathering abilities.
Immediate Actions
  • Aggregate all available open data at the ZIP Code level.
  • Work with larger CBOs using digital tools to collect key information about their neighborhoods and communities.
  • Potentially aggregate federal funds into county or ZIP Code level.
Long-Term Goals Enhance decision-making for local stakeholders and improve interoperability for hyper-local data.

Create State-Level SDOH Strategy Toolkits

The Problem: States often face difficulties in implementing and distributing funding from the federal government to carry out comprehensive SDOH strategies. Without the proper resources and support from the federal government, HHS and the healthcare sector will face challenges in scaling and coordinating data collection strategies across the country.

Solution Create state-level toolkits and resources to enable state agencies to implement comprehensive SDOH data strategies.
Impact Scale and streamline standardized data collection across states.
Resources Needed Funding to gather information about state-wide best practices, funding for pilot models, staff resources to coordinate toolkits.
Stakeholders Public health agencies, state health departments, patients and patient advocates, CMMI, health insurers and providers, private SDOH data platforms (Unite Us, Healthify, etc.)
Policy Changes State-level Medicaid Plan Amendments on an as-needed basis to reflect changes to Medicaid administration.
Immediate Actions
  • Identify best practices from existing state initiatives
  • Create targeted technical documents and state-based case studies for guidance
  • Develop online portal to host these resources
  • Pilot toolkits with select states already developing SDOH strategies
Long-Term Goals Ensure that states are effectively aligning SDOH strategies with national guidance.