COMMUNITY-BASED PARTICIPATORY RESEARCH TO PARTNER WITH THE CONFEDERATED SALISH AND KOOTENAI TRIBES IN PHARMACOGENETICS RESEARCH

Chelsea Theresa Morales, The University of Montana

Abstract

Pharmacogenetics research has advanced our knowledge of the genetic basis of individual drug responses. The aim of pharmacogenetics research is to provide opportunities for the development of strategies aimed at discovering clinically relevant gene-drug pairs. Further benefits stem from the translation of pharmacogenetics research into the clinic to identify patients who are at high risk of adverse drug events. However, American Indian and Alaska Native (AI/AN) populations have not benefited markedly from genetics-guided therapeutics. A key strategy in engaging AI/AN people in pharmacogenetics research has been the implementation of community-based participatory research (CBPR). CBPR is a qualitative research methodology in which a partnership is formed between the research institution and the community under study. CBPR provides a framework for both partners to be involved in all aspects of the research process, from developing research questions to data analysis, and dissemination of research findings. Early in the project, approval was given by the Confederated Salish and Kootenai Tribes (CSKT) through discussions with Tribal Health and Tribal Council to conduct pharmacogenetics research with the CSKT community. Thereafter, a collaborative university-community partnership was established with the CSKT to ensure the community has sufficient knowledge about pharmacogenetics research and to develop culturally-relevant research strategies. We formed an oversight committee, the Community Pharmacogenetics Advisory Council (CPAC), to ensure community involvement. We also held workshops to provide education and bring awareness to the community about pharmacogenetics research. CPAC engagement and education through workshops and research involvement was evaluated through a questionnaire. Seventeen healthcare provider interviews have been conducted, transcribed, and analyzed. The interviews were conducted with Montana healthcare providers to assess their views on the potential benefits and harms of pharmacogenetics research and the feasibility of its future implementation into Tribal Health. In addition, two focus groups have been conducted thus far. CPAC helped design a moderator’s guide and developed recruitment tools for focus groups. These focus group materials were used and will continue to be used to conduct focus groups with enrolled CSKT members who receive their healthcare through Tribal Health to assess their views and perceptions of pharmacogenetics research, its translation into the clinic, and dissemination of results to the broader community. The details of the results of the focus groups and healthcare provider interviews will be described in this study. This collaboration created a CBPR framework that best fits the needs of the community. Engaging CSKT community partners in informal and formal discussions about pharmacogenetics research has aided in identifying priorities of the community and building mutually productive partnerships

 

© Copyright 2013 Chelsea Theresa Morales