At the intersection of trust and mistrust: A qualitative analysis of motivators and barriers to research participation at a safety‐net hospital

Author:

Tamlyn Autumn L.1ORCID,Tjilos Maria1,Bosch Nicholas A.23,Barnett Katherine Gergen4567,Perkins Rebecca B.89,Walkey Allan2310,Assoumou Sabrina A.111,Linas Benjamin P.11112,Drainoni Mari‐Lynn1011

Affiliation:

1. Boston Medical Center, Section of Infectious Disease Boston MA USA

2. Boston Medical Center, The Pulmonary Center, Department of Medicine Boston MA USA

3. Boston University Chobanian & Avedisian School of Medicine, Section of Pulmonary, Allergy, Sleep, & Critical Care, Department of Medicine Boston MA USA

4. Boston Medical Center, Department of Family Medicine Boston MA USA

5. Boston University Chobanian & Avedisian School of Medicine, Department of Family Medicine Boston MA USA

6. Harvard Center for Primary Care, Center for Primary Care Boston MA USA

7. Aspen Health Innovation Washington DC USA

8. Boston Medical Center, Department of Obstetrics and Gynecology Boston MA USA

9. Boston University Chobanian & Avedisian School of Medicine, Department of Obstetrics and Gynecology Boston MA USA

10. Boston University School of Public Health, Department of Health Law Policy & Management Boston MA USA

11. Boston University Chobanian & Avedisian School of Medicine, Section of Infectious Disease Department of Medicine Boston MA USA

12. Boston University School of Public Health, Department of Epidemiology Boston MA USA

Abstract

AbstractIntroductionThe underrepresentation of Black, Indigenous, and People of Color (BIPOC) individuals in healthcare research limits generalizability and contributes to healthcare inequities. Existing barriers and attitudes toward research participation must be addressed to increase the representation of safety net and other underserved populations.MethodsWe conducted semi‐structured qualitative interviews with patients at an urban safety net hospital, focusing on facilitators, barriers, motivators, and preferences for research participation. We conducted direct content analysis guided by an implementation framework and used rapid analysis methods to generate final themes.ResultsWe completed 38 interviews and identified six major themes related to preferences for engagement in research participation: (1) wide variation in research recruitment preferences; (2) logistical complexity negatively impacts willingness to participate; (3) risk contributes to hesitation toward research participation; (4) personal/community benefit, interest in study topic, and compensation serve as motivators for research participation; (5) continued participation despite reported shortcomings of informed consent process; and (6) mistrust could be overcome by relationship or credibility of information sources.ConclusionDespite barriers to participation in research studies among safety‐net populations, there are also facilitators that can be implemented to increase knowledge and comprehension, ease of participation, and willingness to join research studies. Study teams should vary recruitment and participation methods to ensure equal access to research opportunities.Patient/Public ContributionOur analysis methods and study progress were presented to individuals within the Boston Medical Center healthcare system. Through this process community engagement specialists, clinical experts, research directors, and others with significant experience working with safety‐net populations supported data interpretation and provided recommendations for action following the dissemination of data.

Funder

National Heart, Lung, and Blood Institute

Publisher

Wiley

Subject

Public Health, Environmental and Occupational Health

Reference55 articles.

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