Because the frequency of major risk factors for respiratory diseases (e.g., tobacco use) differs across demographic groups (defined by socioeconomic status, race/ethnicity, sexual orientation, health care access, occupation, or other characteristics), health disparities are commonly encountered in pediatric and adult pulmonary, critical care, and sleep medicine. As part of its policy on respiratory health disparities, the American Thoracic Society (ATS) Executive Committee created a Health Equality Subcommittee of the Health Policy Committee, with an initial mandate of defining respiratory health equality and, as a subsequent task, providing recommendations to the ATS leadership as to how our society may help attain such equality in the United States. After receiving input from the ATS assemblies and committees, the subcommittee developed this document on respiratory health equality. This document defines respiratory health disparities and respiratory health equality, and expands on a recent ATS and European Respiratory Society policy statement on disparities in respiratory health. Attainment of respiratory health equality requires the ending of respiratory health disparities, which can be achieved only through multidisciplinary efforts to eliminate detrimental environmental exposures while promoting a healthy lifestyle, implementing all components of high-quality health care (prevention, screening, diagnosis, and treatment), and conducting research that will lead to better prevention and management of respiratory diseases for everyone. The ATS recognizes that such efforts must include all stakeholders: members of society at large, governmental and nongovernmental organizations, and other professional societies. The ATS urges all of its members and those of sister societies to work to achieve this laudable goal.
Background:
Well-designed clinical research needs to obtain information that is applicable to the general population. However, most current studies fail to include substantial cohorts of racial/ethnic minority populations. Such underrepresentation may lead to delayed diagnosis or misdiagnosis of disease, wide application of approved interventions without appropriate knowledge of their usefulness in certain populations, and development of recommendations that are not broadly applicable.
Goals:
To develop best practices for recruitment and retention of racial/ethnic minorities for clinical research in pulmonary, critical care, and sleep medicine.
Methods:
The American Thoracic Society convened a workshop in May of 2019. This included an international interprofessional group from academia, industry, the NIH, and the U.S. Food and Drug Administration, with expertise ranging from clinical and biomedical research to community-based participatory research methods and patient advocacy. Workshop participants addressed historical and current mistrust of scientific research, systemic bias, and social and structural barriers to minority participation in clinical research. A literature search of PubMed and Google Scholar was performed to support conclusions. The search was not a systematic review of the literature.
Results:
Barriers at the individual, interpersonal, institutional, and federal/policy levels were identified as limiting to minority participation in clinical research. Through the use of a multilevel framework, workshop participants proposed evidence-based solutions to the identified barriers.
Conclusions:
To date, minority participation in clinical research is not representative of the U.S. and global populations. This American Thoracic Society research statement identifies potential evidence-based solutions by applying a multilevel framework that is anchored in community engagement methods and patient advocacy.
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