Journal Article

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

Barnett, Katherine Gergen, Tamlyn, Autumn L., Tjilos, Maria, Linas, Benjamin P., Perkins, Rebecca B., Walkey, Allan, Bosch, Nicholas A., Assoumou, Sabrina A., Drainoni, Mari‐Lynn

2023

Overview

Introduction The 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. Methods We 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. Results We 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. Conclusion Despite 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 Contribution Our 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.

• Publisher: John Wiley & Sons, Inc,John Wiley and Sons Inc,Wiley
• Subject: Access / Accountable care organizations / African Americans / Attitudes / Barriers / Clinical research / Clinical trials / Community involvement / Community participation / Community research / Compensation / Comprehension / Content analysis / Coronaviruses / COVID-19 / Credibility / Data analysis / Data interpretation / Dissemination / Generalizability / Health care / Health care facilities / Health disparities / Health Knowledge, Attitudes, Practice / Health services / Health Services Research / Hospitals / Humans / Indigenous peoples / Inequality / Information sources / Informed consent / Interviews / Marginalized groups / Medicaid / Medical research / Minority & ethnic groups / mistrust / Motivation / Multiculturalism & pluralism / Original / Participation / Patients / Population studies / Populations / Public participation / qualitative / Qualitative analysis / Qualitative Research / Recruitment / research participation / Safety / Safety-net Providers / safety‐net patients / Socioeconomic factors / Specialists / Teams / Trust / Underserved populations / Willingness