Common Data Elements and Social Determinants of Health

What are Common Data Elements?

Common data elements (CDEs) are standardized, precisely defined questions paired with a set of specific allowable responses, used systematically across different sites, studies, or clinical trials to ensure consistent data collection^[1]. These can be used to capture complex phenomena, like depression or recovery, in a standardized way across studies or trials.

What are Social Determinants of Health?

Social Determinants of Health (SDoH) are the conditions and environments in which people are born, live, work, play, worship, and age^[2]. These nonmedical factors affect a wide-range of health and quality-of-life outcomes and risks. Healthy People 2030 grouped SDoH into 5 domains: Economic Stability, Education Access and Quality, Health Care Access and Quality, Neighborhood and Built Environment, and Social and Community Context^[3].

The five social determinants of health — Healthy People 2030, U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Retrieved 3/9/2023 from https://health.gov/healthypeople/objectives-and-data/social-determinants-health

Why do They Matter?

Addressing SDoH is a key approach to reducing health disparities and achieving health equity. For example, people without access to healthy food because of economic instability or lack of access to a grocery store are at a higher risk of being diagnosed with diabetes or obesity and have lowered life expectancies.

Using CDEs, researchers can collect standardized data about SDoH in clinical research studies. By collecting this data in a consistent way, researchers can better understand how SDoH contribute to health inequities and share this data with other stakeholders. Currently, there are several ongoing efforts to develop CDEs for SDoH by organizations like the Gravity Project, the PhenX Toolkit, All of Us, USCDI, and more.

ODSS and CDEs

ODSS encourages the use and development of CDEs in partnership with NIH Institutes, Centers, and Offices. The FY23 federal budget includes the following language, supporting continued collaborations to expand the use and scope of CDEs:

The agreement recognizes the increasing importance of CDEs that enable standardized and consistent use of data in research, especially translational and clinical research, and that facilitate efforts to replicate and validate findings, for a disease area. The NIH encourages use of CDEs including use of the NIH's CDE repository. To encourage development and use of CDEs in disease areas where they currently do not exist, the agreement directs ODSS to work with ICs to support efforts to develop CDEs, including through collaborations with research stakeholders. The agreement also directs ODSS to provide a list of diseases and disease areas actively under development, such as immune and immune-mediated conditions, to inform further NIH efforts to support development of such elements^[4].

ODSS plans to conduct several activities in partnership with the National Library of Medicine (NLM) to fulfill this Congressional report language. Learn more about the NLM CDE Repository.