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

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

Sarah H Nash, Rochelle Greenley, Daniela Dietz-Chavez, Stephen Vindigni, Tabitha Harrison, Ulrike Peters and Diana Redwood
Journal of community health, Vol.45(4), pp.803-811
08/2020
DOI: 10.1007/s10900-020-00796-x
PMCID: PMC8108442
PMID: 32144608
url
https://www.ncbi.nlm.nih.gov/pmc/articles/8108442View
Open Access

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.
Adult Aged Alaska Alaskan Natives - statistics & numerical data Colonic Neoplasms Colorectal Neoplasms - diagnosis Colorectal Neoplasms - ethnology Community-Based Participatory Research Early Detection of Cancer Feedback Female Focus Groups Humans Male Middle Aged Pilot Projects Prospective Studies

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