Social determinants of health, as defined by the Office of Disease Prevention and Health Promotion, are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. Over the past few years, the role that social determinants of health (SDOH) plays in healthcare and health outcomes has become widely recognized throughout all aspects of the healthcare industry. As such, organizations in the United States and around the world have highlighted the need for SDOH information to be included in a patient’s health record to better treat the patient on a holistic basis, using a more “whole-person” approach to healthcare.
How Does SDOH Impact Health Outcomes?
SDOH can have direct impact on both individuals and populations, affecting medication adherence (due to limited access or ability to pay), nutritional needs, and overall healthcare outcomes. It is important to note that SDOH plays a key role in health equity, which is defined as “creating a fair and just opportunity to be as healthy as possible and removing obstacles to health stemming from socio-demographic factors like poverty and discrimination.” This intersects with SDOH since removing obstacles to advance health equity includes increasing access to education, housing, safe environments, and healthcare.
Federal Support to Improve Social Determinants of Health Data Standards
As the impact of SDOH on health outcomes has gained recognition, the healthcare IT data standards world is moving to address the needs of exchanging this information. Specifically, this drive focuses on creating data standards and processes for capturing SDOH data, which was typically siloed or underreported. Furthermore, capturing SDOH data can bolster understanding of community and population health—and better inform interventions. For this reason, federal agencies and healthcare IT organizations are increasingly pushing for better data.
In the healthcare industry, interoperability standards have paved the way to improve SDOH data. Among HL7® FHIR® and older data standards, there is support for SDOH data evolving, driven by the Office of the National Coordinator for Health IT (ONC), an office within Health and Human Services (HHS). The ONC is the principal federal entity charged with coordination of nationwide efforts to implement and use the most advanced health information technology, and the electronic exchange of health information. It is ONC’s primary focus to enhance the collection and exchange of healthcare data, including SDOH. ONC has brought focus to the SDOH issue by driving the effort to include this data throughout the healthcare realm.
In 2019, the ONC began their drive to have SDOH data better integrated in electronic health records (EHRs) and interoperability data. This includes SDOH regarding social, psychological, and behavioral data, and issues such as food and housing instability, via their Interoperability Standards Advisory. The advisory gives specific guidance on the terminologies and interoperability standards that incorporate SDOH information.
In May 2020, ONC published the United States Core Data for Interoperability (USCDI) and added data elements for SDOH goals. These data elements identify “a future desired condition or change in condition related to an SDOH risk in any domain and is established by the patient or provider.”
In January 2021, ONC released the USCDI version 2, which included two data elements for sexual orientation and gender identity, and four additional SDOH data elements in food, housing, and transportation insecurity to help coordinate care and assistance for at-risk patients.
In January 2022, ONC released a draft of USCDI version 3, with a plan to release the final version in July 2022. To further improve health equity, ONC is proposing the addition of a new data class called “Health Status,” which would include disability status, mental function, functional status, and pregnancy status.
While action at the federal level is key to move the industry in the correct direction, healthcare and health IT organizations have much work to do to help take the federal requirements and move them into their production environments. This would help move the data to where it’s needed to help providers give whole-person care.
Improving SDOH Data Standards
Within the healthcare IT space, there are numerous codes and code systems to deal with the various aspects of care. Across the United States, the HHS and the American Medical Association (AMA) have created systems to manage the codes needed for diagnosis, treatment, medications, and other facets of care. Internationally, the World Health Organization (WHO) and others have created comprehensive care-management code systems that are used as is or have been customized for individual country use.
Key among the groups moving to address SDOH data standards has been the Gravity Project, a national collaborative that has worked to address social determinants of health data across four clinical activities: screening, diagnosis, goal setting, and intervention activities. Launched in late 2018 under HL7’s FHIR Accelerator program, the Gravity Project’s mission states that it aims to, “create and maintain a consensus building community to expand available SDOH core data for interoperability and accelerate standards-based information exchange by using HL7 FHIR.”
The base for this project is the HL7 FHIR standard as, by design, it has the flexibility to meet these challenges. Older standards, such as Clinical Document Architecture (CDA) and HL7 V2 messaging, have much more stringent and slow-moving methods of creating specifications to address use cases. FHIR, on the other hand, has the ability for anyone to create an “Implementation Guide” to solve an issue. These guides take the existing FHIR specification and constrain it to address specific needs of a healthcare use case.
Currently, the Gravity Project is working with the other standards development organizations such as WHO (for ICD-10), LOINC, and SNOMED, and U.S.-based terminologies such as CPT (diagnosis), HCPCS (billing), and RXnorm (medications), to publish vocabulary to support the exchange of SDOH data and HL7 FHIR SDOH Clinical Care Implementation Guide. This FHIR implementation guide specifically focuses on standard FHIR-based formats for exchanging SDOH-related information.
The SDOH Clinical Care Implementation Guide (IG) defines how to represent coded content used to support the following care activities: screening, clinical assessment/diagnosis, goal setting, and the planning and performing of interventions. This IG addresses the need to gather SDOH information in multiple settings, share that information between stakeholders, and exchange referrals between organizations to address specific social risk needs, all with appropriate patient consent. In addition, the IG demonstrates how to share clinical data to support secondary purposes such as population health, quality, and research.
As is expected with FHIR, once the Gravity Project publishes, other FHIR implementation guides will directly or indirectly reference this work to include SDOH data across the FHIR spectrum.
Social Determinants of Health in Care Planning
In October 2019, the HL7 Patient Care workgroup published their whitepaper detailing the uses of SDOH information within the healthcare planning environment. This paper was an intensive view of the SDOH landscape designed to give information to help the workgroup update their overall model for care plan standards. The overall model will be designed as a blueprint to inform revision of Clinical Document Architecture (CDA) care plan template and FHIR care plan and related resources improvements. This model is currently under development and will be released for public comment in 2022.
CDA, V2 and More
The older standards are moving toward SDOH inclusion via the Gravity Project’s vocabulary elements and ONC lead information. For example, the Clinical Document Architecture (CDA) markup standard can add SDOH information to a CDA Care Plan, Consolidated-CDA (C-CDA), or other clinical document via observation entries. Supplemental information can be added by the upcoming changes which will be driven by the HL7 Patient Care model.
Currently, HL7 V2 messages, such as admission, discharge, transfer notifications (ADT), or other V2 message templates, have basic information on Race and Ethnicity but are working toward adding more data elements in a future release, such as Sex for Clinical Use (SFCU), Gender Identity, Recorded Sex, or Gender, Pronouns, and Name to Use. These elements are under review by the HL7 V2 messaging management group for possible inclusion in Version 2.9.1., and are following guidance put forward by ONC information published as Sex at Birth, Sexual Orientation and Gender Identity (SOGI). Further work continues in the HL7 V2 Management Group around how a new “segment” or section of a V2 message might be created specifically for this and aligned with the CDA and FHIR SDOH efforts.
As social determinants of health are brought forward into the spotlight for managing care, health IT systems need to recognize the supporting standards and help move that data into EHR record to provide better care for patients with health equity challenges. Moving to FHIR and its better support for SDOH data exchange will help move these data forward. Participating in the Gravity Project and/or HL7 can help create new and better standards to make SDOH data exchange better and faster for everyone
David Pyke has been working with Healthcare IT in the EMEA, USA, and other regions providing technical design, strategic advice, and training for organizations and governments, for over 15 years. David is a subject matter expert in HIEs and health IT standards including FHIR, privacy, and security. He is a co-chair and member of technical workgroups for healthcare IT standards development organizations including IHE and HL7.
As an active member of HL7 International, David is a member of the Technical Steering Committee, a Project Lead on the FHIR Consent Resource project and co-chair of the Community-Based Care and Privacy Workgroup. David is a trainer on FHIR and FHIR implementation guide creation, the lead author of the TEFCA QHIN Technical Framework, and author of public and private FHIR Implementation Guides.