Rationale for the Social Determinants of Health Project

The goal of the PhenX measures for social determinants of health (SDoH) project is to establish a collection of Common Data Elements (CDEs) to improve the quality and consistency of data acquisition and facilitate collaboration. The ability to easily share and combine data from multiple studies has the potential to increase the scientific impact of individual studies.

Background

In 2018, Dr. Eliseo Perez-Stable, Director of the National Institute on Minority Health and Health Disparities (NIMHD) called on NIMHD to lead an effort to develop a consensus toolbox of measures on SDoH. Social determinants, the conditions in which people are born, grow, live, work and age, are known to drive health disparities. While there is wide-spread recognition of the importance of SDoH, overall scientific progress in addressing SDoH has been hindered by the lack of a resource to facilitate collection of CDEs for SDoH. Wide adoption of CDEs on SDoH across behavioral, clinical, and translational research will facilitate cross-study analysis, domestically and internationally, accelerate translational research, and lead to greater understanding of the causes of health disparities and the design and implementation of effective interventions to reduce health disparities.

NIMHD supported the development of these PhenX supplements, leveraging the NHGRI-supported PhenX infrastructure and resources to create a research resource of recommended, well-established, broadly applicable and generally accepted assessments of SDoH with relevance for diverse population groups and many diseases and conditions. The Core and Specialty SDoH collection measurement protocols will promote adoption of comparable data on SDoH across studies.

By advocating the use of these common measures, NIMHD and its partners aim to advance minority health and health disparities science and promote a culture of scientific collaboration.

Criteria for Selecting Measures

The WG selected measurement protocols for the PhenX Toolkit using criteria defined by the PhenX Steering Committee (SC). The criteria for selecting protocols for release in the PhenX Toolkit are found here.