Document Type
Article
Publication Date
2021
Abstract
Many promising advances in precision health and other Big Data research rely on large data sets to analyze correlations among genetic variants, behavior, environment, and outcomes to improve population health. But these data sets are generally populated with demographically homogeneous cohorts. We conducted a retrospective cohort study of patients at a major academic medical center during 2012–19 to explore how recruitment and enrollment approaches affected the demographic diversity of participants in its research biospecimen and data bank. We found that compared with the overall clinical population, patients who consented to enroll in the research data bank were significantly less diverse in terms of age, sex, race, ethnicity, and socioeconomic status. Compared with patients who were recruited for the data bank, patients who enrolled were younger and less likely to be Black or African American, Asian, or Hispanic. The overall demographic diversity of the data bank was affected as much (and in some cases more) by which patients were considered eligible for recruitment as by which patients consented to enroll. Our work underscores the need for systemic commitment to diversify data banks so that different communities can benefit from research.
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.
Recommended Citation
Price II, W. Nicholson. Spector-Bagdady, Kayte, Sherigpu Tang, Sarah Jabbour, W. Nicholson Price II, Ana Bracic, Melissa S. Creary, Sachin Kheterpal, Chad M. Brummett, and Jenna Wiens. 2021. “Respecting Autonomy And Enabling Diversity: The Effect Of Eligibility And Enrollment On Research Data Demographics.” Health Affairs 40 (12): 1892–99. doi:10.1377/hlthaff.2021.01197
Included in
Health Services Research Commons, Inequality and Stratification Commons, Other Medicine and Health Sciences Commons, Race and Ethnicity Commons
Comments
Spector-Bagdady, Kayte; Sherigpu Tang, Sarah Jabbour, W. Nicholson Price II, Ana Bracic, Melissa S. Creary, Sachin Kheterpal, Chad M. Brummett, and Jenna Wiens. 2021. “Respecting Autonomy And Enabling Diversity: The Effect Of Eligibility And Enrollment On Research Data Demographics.” Health Affairs 40 (12): 1892–99. doi:10.1377/hlthaff.2021.01197
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