Engendering trustworthiness in the community: Strategies for researchers

BackgroundDespite significant advances in Alzheimer's disease treatment, underrepresentation of ethnoracialized groups in clinical trials limit the generalizability of study findings. Though mistrust in health care research is a known barrier to clinical trial participation, methods are needed to quantitate this multidimensional subjective term. This study investigated how Black participants view trustworthiness.ObjectiveTo provide an overview of participants' views of a trustworthy study design and investigator.MethodsThis qualitative study utilized focus group discussions with Black participants 45 years and older. Transcripts were coded by three researchers by means of content analysis. After central categories were identified using concept mapping, we constructed a conceptual model of trust to reflect participants' views of trustworthiness.ResultsParticipants self-identified as Black, were a mean age of 62, and predominantly female (80%). Focus group analysis revealed that a trustworthy study design and its impact as well as a trustworthy investigator were central categories of trustworthiness. Comprehensive study outlines, detailed information on the disease being studied, and sharing of study results improved participants' willingness to be involved in studies. Participants also value researchers who are scientifically and culturally competent, knowledgeable, attentive and who engage in education and sharing comprehensive resources on diseases impacting vulnerable populations.ConclusionsThese findings suggest that trustworthy features of the study design and researcher characteristics can provide a foothold to build trust with a population whose mistrust of research is well-documented. Further research on trustworthiness is necessary to develop tools to create a framework for building a trustworthy research environment.