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Thematic analysis of sexual and gender minority enrollment in the all of us Pennsylvania project: implications for public health research

Bohnert, Kelsey (2019) Thematic analysis of sexual and gender minority enrollment in the all of us Pennsylvania project: implications for public health research. Master's Thesis, University of Pittsburgh. (Unpublished)

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To date, large-scale population studies have failed to fully assess the health of sexual and gender minority (SGM) populations. With the implementation of individualized healthcare, comprehensive patient information—including gender identity and sexual orientation (GI/SO)—are gaining recognition as critically important to designing holistic treatment plans and engaging patients. Historically, SGMs have been described in the context of existing health disparities, most commonly substance abuse and HIV/AIDS. The All of Us National Precision Medicine research project is a historic effort to gather health information from one million Americans and has emphasized engaging with populations historically underserved and underrepresented in biomedical research, including SGM populations. To increase SGM representation, better understanding of the barriers and facilitators to enrollment in public health research is necessary. This study explored the attitudes, knowledge, and beliefs of 23 self-identified SGMs regarding public health research across six focus groups in Pittsburgh, PA. Participants who had previously enrolled in All of Us were also asked specifically about their enrollment experience. Discussions were audio-recorded and evaluated using thematic analysis. Five themes were identified: (1) explicit invitations and clear messaging, (2) factors that tip the scales, (3) variation of SGM research accessibility, (4) barriers and facilitators to disclosing identity, and (5) personalization of the research experience. Participants acknowledged numerous social ecological factors that may influence their decision to enroll in a study, including SGM-specific advertising, well-trained staff who create a comfortable atmosphere, inclusive demographic questionnaires that allow for complete identity disclosure, and the ability to opt out of uncomfortable study components when possible. Based on participant recommendations, All of Us could consider adding same sex couples and gender non-binary individuals to advertising campaigns, clarifying the use of psychiatric records in medical records sharing, and engaging SGM community leaders in recruitment efforts. Beyond program-specific suggestions, the public health significance of this work is the reinforcement of the need for SGM-specific considerations in the design and implementation of research. Researchers can better engage SGMs through explicit invitations to participate, inclusive demographic questionnaires, and a trained staff who can engage with participants with a range of gender identities and sexual orientations.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Bohnert, Kelseykmb304@pitt.edukmb304
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorMassart, Mylyndamassartmb@upmc.edumbm66
Committee MemberGrubs, Robinrgrubs@pitt.edurgrubs
Committee MemberTerry, Martha Annmaterry@pitt.edumaterry
Committee MemberKrier, Sarahsek29@pitt.edusek29
Date: 24 July 2019
Date Type: Publication
Defense Date: 21 June 2019
Approval Date: 24 July 2019
Submission Date: 28 June 2019
Access Restriction: 1 year -- Restrict access to University of Pittsburgh for a period of 1 year.
Number of Pages: 151
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Public health, SGM, LGBT, sexual and gender minority, research participation, qualitative research, focus groups
Date Deposited: 24 Jul 2019 13:47
Last Modified: 01 Jul 2020 05:15


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