Coding and Co-design: Social Care and Health Care Lessons from the Gravity Project

Behind every experience we have with the healthcare system is a string of numbers or letters, a code. These codes form a language that describes and impacts everything from the length of our appointment to what we discuss with our doctor to what is communicated to our insurers and other healthcare providers and how much our doctor or hospital gets paid. 

Language is both a product of and perpetuator of cultural norms. So as we move toward increased healthcare and social care coordination and integration, addressing social needs as part of healthcare, it is essential that we develop new words and shared meanings to not only describe but define how healthcare and social care partner. This is where the Gravity Project comes in.

The Gravity Project is a national public-private multistakeholder collaborative initiative to develop consensus-driven data standards to support the collection, use, and exchange of data to address the social drivers of health (also referred to as social determinants of health (SDOH)). In other words, Gravity writes the codes that are used to document and deliver social care. Gravity helps define how care partners package and communicate information, setting the language, structure, and data types so that health and social services can collaborate, coordinate, and support our social needs.  

These codes continuously evolve. Gravity acknowledges a need to continuously center and expand social care perspectives in the development of these codes and standards. So in 2023, with support from the Robert Wood Johnson Foundation, the Gravity Project, Civitas Networks for Health, and HealthBegins convened 18 national and state-based social care providers with expertise in food, housing, care coordination, WIC and programs for older adults. Through 12 hours of meetings over 12 weeks, plus homework submissions, participants provided detailed input on both use cases for social coding and important insights into the contextual constraints for meaningful collaboration between health and social care. 

The full results of that co-design process can be found in the final report. A set of essential takeaways is summarized in the list and table below.

Gravity is already incorporating these learnings into the Gravity Project’s efforts for this year to build new terminology and support data infrastructure, but there is more work to be done. Gravity needs feedback from diverse stakeholders (including you!) to create data standards and terminology that support the culture we want, and not the one we have. In our recent webinar on the co-design process, attendees asked questions about how codes can be trauma informed for children and families, how to ensure codes don’t perpetuate ageism or other “isms,” and how to negotiate patients’ feedback that they don’t like being “labeled.” Attendees also asked how we can mobilize healthcare and social care to engage in collaboration and adopt consensus-based standards.These are important questions that need to keep being asked and reasked throughout this process. 

The co-design participants’ feedback was grounded in Gravity’s work but also broader than the scope of Gravity, broader than codes and data, and it calls on all of us to think about how we change the underlying dynamics of healthcare and social care partnerships so that we can achieve a bigger vision of a coordinated system that meets the needs of the community. Here are some of the key lessons.

Context Matters

While the primary charge of the co-design social care participants was to provide feedback on data standards, the social care participants emphasized that to be effective, reforms must extend well beyond the codes themselves. They underscored that the current context of social care and healthcare partnerships must evolve in order for the promise of coordinated health and social care data to be realized. The key themes that were repeatedly raised throughout the sessions were:

  • The power imbalance between social care partners and healthcare must be acknowledged and addressed in order to build the trust necessary for effective partnerships.
  • Social care providers are underfunded, which impairs their ability to meet community needs and participate in data sharing and data infrastructure initiatives.
  • Some federal and state policies impede the ability to create a cohesive and coordinated health system. For example, Area Agencies on Aging and the Supplemental Nutrition and Assistance Program for Women, Infants and Children (WIC) both have regulations that impact data sharing. Other social care providers have mandatory taxonomies and data platforms dictated by state and federal funders that make data integration with healthcare challenging. 
  • Community members and their families need to be centered in the development of data solutions. This includes providing them control of their own data while balancing the administrative burden of that control for both organizations and clients. 
  • The current system lacks clear and appropriate accountability and responsibility across healthcare and social care. 

Use Cases 

Gravity develops specific standards and data terminology around use cases, or specific situations where you might need data infrastructure requirements and codes. The original Gravity conceptual model had four use cases: screening, assessment, goal setting, and treatment/interventions. The co-design participants identified eight new use cases, and within each use case, new and old, identified opportunities for data to better support the vision of improved healthcare and social care collaboration—as detailed below.

Use Case Opportunity Identified by Co-Design Participants
Screening is a population-level activity to identify unmet social needs.  Reduce duplication of effort including repeated screenings, incomplete referrals requiring re-evaluations, and referring a person to a service for which they are not eligible 
Social Risk Assessment is evaluating one presenting need. Map data standards to existing social care standardized assessments and develop standardized domains and data for social care providers without standardized assessments.
(New) Holistic Assessment is a robust, comprehensive assessment of social, physical, emotional, and ecosystem context to identify risks, needs, strengths, and supports toward the aim of establishing priorities and goals.  Include in the holistic assessment information about the client’s ecosystem or context (e.g., the client lives in a food desert). Distinguish between assessments needed to address emergency needs and assessments needed to develop long-term supports and care.
(New) Acuity Assessment is a shared language around urgency or acuity for both receiving referrals from health care and sending referrals to health care.  Support an appropriate speed of response. This is uniquely important in social care, where capacity may impact how quickly a community member receives the needed service.
Intervention Referral is directing someone to needed services after those needs have been identified. Note: The participants also identified another potential related use case: Intervention Coordination & Provision, for which there were no unique opportunities. Ensure 

1) that individuals receive appropriate referrals (rather than a comprehensive list)

2) that receiving social care providers have timely and complete information on the referral 

3) that referral data collection is streamlined to the extent possible

4) that duplication of referrals to the same place are reduced

5) that health and social care providers can close the loop on provided referrals

(New) Eligibility & Capacity includes intervention eligibility (the person could benefit from the service) and service/program-specific eligibility (whether or not they meet the criteria for a specific service). Distinguish between eligibility, enrollment, and recertification and have the necessary logistical details to support eligibility and enrollment. Broadly, participants noted an opportunity to align eligibility across social care services and to incorporate health and social care information in the development of waitlists. 
(New) Shared Care Planning is the development of a plan that reflects community constraints and individual needs and strategies, may support coordination across organizations and sectors, and is dynamic and constantly changing.  Develop terminology to assist in longitudinal and collaborative care planning between health and social care providers, including initiation of shared care plan, short-term care planning, and long-term care planning for individuals who require intensive cross-system support and collaboration.
(New) Health/Social Care Coordination/Collaboration is when the social and health needs are so interconnected that the community member requires a care plan that encompasses health care needs and social needs that are echoed by both health care and social care providers. None identified
(New) Reimbursement & Investment is the health care reimbursement of social care activities. Reduce the administrative burden for social care to contract with health care due to variation between payers, mandated use of payer documented systems, and the requirement that social care funded by Medicaid be “health-related.”
(New) Individual Outcome Evaluation is an assessment of the results of an individual’s plan of care.  Assess whether an intervention has a long-term impact on self-sufficiency or if community members require the same intervention year over year.
(New) Population Aggregation, Outcomes Evaluation is using accumulated social care data to better understand community-level trends. Identify structural and systemic forces impacting individuals in order to support systemic change. 

Get Involved

It can feel uncomfortable that in health care we convert whole people to five-digit codes of diagnosis and demographics that, beyond being reductive, may carry the stigma of the broader culture. This risk is expanded when we move beyond the language of science and into the ways we live. The opportunity of coordinated health and social care and improved reimbursement for social care outweighs the risk. But it is critical that all of us, representing a diversity of professional and lived experience, engage in shaping these codes in order to continue to guard against those risks. Your opinion matters and is needed. The Gravity Project wants to hear it. 

Visit this website to learn more about the Gravity Project. You can also join the community and access implementer resources.  

This work was generously funded by the Robert Wood Johnson Foundation. The views expressed in this report do not necessarily reflect the views of the Foundation.

By: Kathryn Jantz (she/her), Senior Associate at HealthBegins