Partnership with the Confederated Salish and Kootenai Tribes: Establishing an Advisory Committee for Pharmacogenetic Research

Abstract

Background Inclusion of American Indian and Alaska Native (AI/AN) populations in pharmacogenetic research is key if the benefits of pharmacogenetic testing are to reach these communities. Community-based participatory research (CBPR) offers a model to engage these communities in pharmacogenetics. Objectives An academic-community partnership between the University of Montana and the Confederated Salish and Kootenai Tribes (CSKT) was established to engage the community as partners and advisors in pharmacogenetic research. Methods A community advisory committee, the Community Pharmacogenetics Advisory Council (CPAC), was established to ensure community involvement in the research process. To promote bidirectional learning, researchers gave workshops and presentations about pharmacogenetic research to increase research capacity and CPAC members trained researchers in cultural competencies. As part of our commitment to a sustainable relationship, we conducted a self-assessment of the partnership, which included surveys and interviews with CPAC members and researchers. Results Academic and community participants agree that the partnership has promoted a bidirectional exchange of knowledge. Interviews showed positive feedback from the perspectives of both the CPAC and researchers. CPAC members discussed their trust in and support of the partnership as well as having learned more about research processes and pharmacogenetics. Researchers discussed their appreciation of CPAC involvement in the project and guidance the group provided in understanding the CSKT community and culture. Discussion We have created an academic-community partnership to ensure CSKT community input and to share decision-making about pharmacogenetic research. Our CBPR approach may be a model for engaging AI/AN people, and other underserved populations, in genetic research.

Success in Long-Standing Community-Based Participatory Research (CBPR) Partnerships: A Scoping Literature Review

“…Only four partnerships described the development of instruments to measure their partnerships (Arora, Krumholz, Guerra, & Leff, 2015; Arroyo-Johnson et al, 2015; Goodman et al, 2017; Pivik & Goelman, 2011), and two used previously established instruments (Hill et al, 2008; Mason et al, 2013). The primary methods used for partnership self-evaluation were surveys, interviews, and/or observations designed by and limited to that partnership alone (Allen et al, 2013; Arroyo-Johnson et al, 2015; Brakefield-Caldwell et al, 2015; Chambers et al, 2015; Goold et al, 2016; Hicks et al, 2012; Jagosh et al, 2015; James et al, 2011; Malone, McGruder, Froelicher, & Yerger, 2013; Morales et al, 2016; Moreno et al, 2009; Tajik & Minkler, 2006).…”

Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review

“…Twenty-one of the 23 articles in this analysis includes a description of community member collaboration throughout the research process, reinforcing the notion that effective partnerships promote successful community-driven projects. These community–academic partnerships underscore the establishment of trust after many AIAN communities have declined to participate in research studies due to past harms (Garrison and Cho 2013; James et al 2014; Blacksher et al 2016; Morales et al 2016; Brockie et al 2017).…”

P450 Pharmacogenetics in Indigenous North American Populations

“…(3) Investigators at University of Montana had established partnerships with the CSKT of the Flathead Indian Reservation in northwestern Montana to pursue research with the Bitterroot Salish, Upper Pend d’Oreille and Kootenai tribes. There are >7900 enrolled CSKT members, with a large number of descendants [ 171 , 173 ]. These research partnerships provided the foundation for the Northwest-Alaska Pharmacogenomic Research Network, academic-tribal partnerships initiated with support from the National Institutes of Health.…”