Incorporating Participant and Clinical Feedback into a Community-Based Participatory Research Study of Colorectal Cancer Among Alaska Native People

将参与者和临床反馈纳入阿拉斯加原住民结直肠癌社区参与式研究中

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Abstract

Alaska Native (AN) people have among the highest rates of colorectal cancer (CRC) globally. We are developing a community-based participatory research (CBPR) informed program to understand risk and protective factors contributing to these high rates. In 2018, we conducted a pilot study to test feasibility of recruiting participants from the Alaska Native Medical Center CRC Screening Clinic into a prospective epidemiologic study. Post-pilot study completion, we conducted focus groups (n = 2) with participants and key informant interviews (n = 7) with research and clinical staff to understand study experiences. During 106 days of recruitment, 30 participants enrolled in the pilot study. Over half (60%) were female, and most (67%) were aged 40-59 years. Key themes that emerged from the participant focus groups were: the desire to contribute to improving the health of AN people as a key driver of participation; an overall positive experience with the study; the benefit of clinical staff notifying patients about the study; the need to clearly explain the purpose of each biospecimen collected; barriers to participation; and, the importance of returning study results to the community. Key themes from research and clinical staff interviews included: the study not interfering with clinical duties; the importance of relationships between clinical and research staff; the importance of research staff flexibility; and, comments on specific study procedures. As part of the CBPR process, this feedback will be incorporated into study protocols. We are building this pilot work into a larger prospective study that will inform primary prevention programs.

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