Abstract A31: Community-based approach to identify keys to research participation

The disproportionately lower number of minority and low income participants in clinical and prevention research has a significant impact on the representativeness of scientific outcomes and result in social and clinical injustices. The purpose of this study was to identify influential perspectives about the research process from ethnically and racially diverse vulnerable community participants and research staff in Western New York (WNY). The aims to achieve this goal were to: 1) Assess participants' perceptions, knowledge and beliefs about medical research participation, and; 2) Develop and evaluate the effectiveness of an initial pilot educational intervention on participants' intention to participate in medical research involving donation of blood samples and epidemiological data to the Data Bank and BioRepository (DBBR) at Roswell Park Cancer Institute. A mixed method, community-based participatory research (CBPR) approach was used to collect formative findings about perceptions, knowledge and beliefs about research participation. These methods included three focus groups (n=28), key informant interviews (n=7), community surveys (n=51), clinical research coordinator surveys (n=28) and participant observation over a one year period. Major findings from the community showed: 1) variation in expectations and understanding about research participation by ethnicity and race; 2) increased fear of exploitation by pharmaceutical company sponsored research compared to a cancer center sponsored research; 3) misperceptions about higher rates of low income, ethnic and minority participation in research compared to white or higher income participants, and; 4) misperceptions about compensation for participation in clinical treatment trials. Survey results from clinical research coordinators at the cancer center demonstrated variable opinions toward including patient advocates and community members into the research protocol and accrual process design. When asked their opinion about having the community involved in clinical treatment trials, the majority (22 of the 27) responded that it was an excellent to pretty good idea. Data from this survey also showed that although 26 of the 28 clinical researcher coordinators agreed that incorporating the community would have a moderate to high impact on their ability to recruit participants into clinical trials, 23 of them also felt that this process would have a moderate to high negative impact on their work and responsibilities. These findings have important implications for future efforts to encourage community participation in research studies and are being applied in an NIH-funded R03 study in Niagara Falls. Detailed survey data and findings from the pilot will be reported.