461 - Creating a Culture of Trust: Experiences of Discrimination in Healthcare and Influence on Beliefs about Research

Poster Number: 461
Publication Number: 461.625

Background: Increasing the diversity of participants in clinical research is essential to growing confidence in the generalizability of results and reducing health disparities. There has been an increasing awareness of systemic racism inside health care, and awareness of mistrust in research since the COVID-19 pandemic. Understanding perspectives of diverse individuals who are seeking clinical care for their children is important to increase representation in pediatric research.

Objective: Evaluate the perspectives of caregiver/parents bringing their child for pediatric specialty health care about perceptions of racial/ethnic group treatment when it comes to research, their personal experiences of health care discrimination, and their attitudes about clinical research.

Design/Methods: A 10-item survey was developed as part of a larger program to evaluate attitudes about research, trust in researchers, learning about research, prior participation in research, and perspectives of discrimination in research (group) or health care (self), along with demographics. Surveys were offered to all English and Spanish language caregivers from two specialty pediatric clinics over a 6-week period at clinic arrival.

Results: Of 521 surveys offered, 362 (70%) were returned fully (321, 62%) or partially (41, 8%) completed, with a range of race/ethnicity (47% White, 24% Black/African American (AA), 16% Hispanic-Table 1). 92% were completed in English; 86% of individuals had not participated in research. Of fully completed responses, 13% (n=43) believed discrimination occurred in research; 15% (n=47) of individuals had experienced health care discrimination (HCD); these were mostly Black/AA (research discrimination 67% AA, HCD 57% Black/AA-Table 2). Individuals with reported HCD were significantly more likely to believe that their group was treated differently in research (p < 0.0001) than those who had not experienced HCD. Comparing groups that responded "both" equal treatment to "neither" equal treatment, in responses to questions about research attitudes, trust, and interest in learning, attitude and trust were more favorable (p=0.021, p=0.035, respectively) and less neutral (p=0.005, p=0.011, respectively). (Table 3)

Conclusion(s): Understanding the role that experiences of HCD have on perceptions of discrimination in research is critical to overcoming obstacles to increasing diversity in clinical trials/research. Through examining these linkages and working to address them singly and together, strategies to increase engagement in research and reduce mistrust could be developed.