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About the Social Determinants of Health Project

PhenX Measures for Social Determinants of Health

In 2018, the National Institute on Minority Health and Health Disparities (NIMHD) funded an administrative supplement to the PhenX project to select high-quality standard measures related to social determinants of health (SDOH) for inclusion in the PhenX (consensus measures for Phenotypes and eXposures) Toolkit (www.phenxtoolkit.org). The goal of the PhenX Measures for SDOH project is to establish a common currency of measurement protocols that will help inform effective interventions to reduce health disparities. In addition, consistent use of standard measurement protocols will improve the quality and consistency of data collection 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 Common Data Elements (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 inequities and the design and implementation of effective interventions to reduce health disparities.

NIMHD supported the development of this PhenX supplement, 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. NIMHD is pleased with the new collections of Core and Specialty SDOH measurement protocols that will promote the collection of comparable data on SDOH across studies. By advocating the use of these common measures, NIMHD and its partners in science aim to further enhance knowledge about minority health and health disparities, while advancing a culture of scientific collaboration.

PhenX Social Determinants of Health Working Group

The PhenX Social Determinants of Health Working Group was composed of nine scientists with relevant expertise, and include:

  • Barbara Entwisle, PhD, (Co-Chair), University of North Carolina at Chapel Hill
  • Alicia Fernandez, MD, (Co-Chair), University of California, San Francisco
  • Paula Braveman, MD, University of California, San Francisco
  • Theresa Cullen, MD, Regenstrief Institute
  • William Darity, Jr, PhD, Duke University
  • Mark Fossett, PhD, Texas A&M University
  • Patrick Remington, MD, University of Wisconsin, Madison
  • Maile Taualii, PhD, Hawaii Permanente Medical Group
  • Consuelo Wilkins, MD, Vanderbilt University

PhenX SDOH Working Group Responsibilities

The goals of the PhenX SDOH WG were to:

  • Identify and review well-established measurement protocols and instruments currently in use in the field
  • Examine SDOH - related measurement protocols in the PhenX Toolkit to ensure that newly selected protocols complement existing Toolkit content
  • Select up to 20 preliminary protocols to share with the research community and get feedback (community outreach)
  • Suggest groups in the research community for the community outreach efforts
  • Consider feedback from community outreach when deciding the high-priority SDOH protocols to be included in the Toolkit
  • Present recommended protocols to the PhenX Steering Committee (SC) for approval

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:

  • Clearly defined
  • Well-established
  • Broadly applicable and generally accepted
  • Low burden to participants and investigators
  • Have demonstrated utility
  • Reproducible
  • Specific
  • Reliable
  • Available and have standard measurement protocols

Additional criteria for selecting PhenX measures are:

  • Crosscutting relevance for population groups as well as diseases and conditions
  • Use in major reference study (e.g., the National Health and Nutrition Examination Survey)
  • Open-source software and nonproprietary instruments preferred
  • Brevity
  • Expectation of acceptance by the research community

PhenX Social Determinants of Health Senior Management Team

National Institute on Minority Health and Health Disparities (NIMHD)
Eliseo PĂ©rez-Stable, MD
National Institute on Minority Health and Health Disparities
Nancy Breen, PhD (Former)
National Institute on Minority Health and Health Disparities
Nishadi Rajapakse, PhD, MHS
National Institute on Minority Health and Health Disparities
Andrew Louden, PhD (Former)
National Institute on Minority Health and Health Disparities
Nancy Jones, PhD
National Institute on Minority Health and Health Disparities
Xinzhi Zhang, MD, PhD (Former)
National Institute on Minority Health and Health Disparities
National Human Genome Research Institute (NHGRI)
Erin Ramos, PhD, MPH
PhenX Project Scientist and SC Liaison to the SDOH WG
Natalie Pino, BA
PhenX Project Analyst
RTI International
Carol M. Hamilton, PhD
Principal Investigator
Cataia Ives, MS
WG Manager
Tabitha Hendershot, BA
Co-Investigator
Deborah Maiese, MPA
Consensus Coordinator
Michelle Krzyzanowski, PhD
WG Supervisor
Amanda Riley, PMP, BSBA
Project Manager