Trust and Biomedical Research Engagement of Minority and Under-Represented Communities in Mississippi, USA

Abstract

Trust is critical to the development and maintenance of effective research collaborations and community engagement. The purpose of this study was to assess the current attitudes and level of trust pertaining to health research among residents of Central Mississippi, the priority health region for the Research Centers in Minority Institutions (RCMI) Center for Health Disparities Research (RCHDR) at Jackson State University. The cross-sectional study was conducted from November 2021 to April 2022. The data were analyzed using descriptive statistics carried out by SPSS statistical software. A total of 146 participants responded to the survey. The participants were predominately African American (99%) and female (75%). Historical research studies, the researchers’ qualities, and potential benefits from participation were factors affecting the level of trust in the research process. Ninety percent (n = 131) expressed that it was important to be involved in the research process, and 98.5% (n = 144) agreed that discussing the research findings with the participants was important for establishing trust in the research process. While trust in the research process does not guarantee participation, trust is a precursor for those who decide to engage in health disparities research. Key findings will be integrated into the RCHDR research agenda to foster further development and implementation of innovative community-based participatory research toward the control and/or prevention of diseases that disproportionately affect minority and under-represented populations in Mississippi.

Recruitment and retention of clinical trial participants: understanding motivations of patients with chronic pain and other populations

“…To trust (verb) is "to commit or place in one's care" or "to rely on the truthfulness" (26). Although not a guarantee, trust is a precursor to clinical trial participation (27). Trust is both a goal and an ongoing process.…”

“…Trust (noun) is “reliance on the character, ability, strength, or truth of someone or something.” To trust (verb) is “to commit or place in one's care” or “to rely on the truthfulness” ( 26 ). Although not a guarantee, trust is a precursor to clinical trial participation ( 27 ). Trust is both a goal and an ongoing process.…”

“…Mistrust in clinical research is often multifactorial, may be conscious or subconscious, and may be reinforced by beliefs, attitudes, and messages among peers, family members, social and mainstream media, and other community members, sometimes including, unfortunately, healthcare providers ( 13 , 15 , 24 , 27 ). Facing a decision around trial participation, patients may host an array of concerns, including how they will be treated, what will happen to their specimens and their data, whether or not their contributions will be appreciated, and whether they are being coerced, whether information about risks of participation is being withheld ( 13 , 27 , 29 ). Many or all of the patients' concerns may go unexpressed.…”

“…There is an ongoing trend among researchers and patient advocates for greater inclusivity among clinical trial participants so that the knowledge base is demographically representative of patients ( 16 , 27 – 29 , 31 ). As for many studies, recruitment goals should go beyond sufficient sample size to include sufficiently diverse representation among enrollees.…”

“…As for many studies, recruitment goals should go beyond sufficient sample size to include sufficiently diverse representation among enrollees. Participant trust is essential to meeting these goals—trust in their referring practitioners, research teams, and the information about the study ( 7 , 27 , 28 ). Tools for eliciting patient concerns and helping them validate and navigate mistrust and ambivalence are shared below under Skillful Communication .…”