Community Engagement in Indigenous Health Research

Community engagement is fundamental to ethical research in Indigenous health, as outlined in the OCAP (Ownership, Control, Access and Possession) principles and the Truth and Reconciliation Commission of Canada: Calls to Action. Patshitinikutau Natukunisha Tshishennuat Uitshuau (A Place for Elders to Spend their Last Days in Life): Developing an Innu Approach to Palliative Care, is a community-based patient-oriented research project investigating the cultural and spiritual needs and practices of the Innu in Sheshatshiu, Labrador regarding end-of-life care. The project was conceived by members of the community who felt this would address real needs of the community, and it has continued in that vein, seeking to empower the community to make decisions about the project throughout the research process.

This presentation will describe how the community and university partners collaborated throughout this project and will discuss the facilitators and barriers to meaningful and effective community engagement encountered along the way. We will address such issues as project inception, design, ethical review, formation of an Indigenous advisory committee, hiring of Indigenous research personnel, data collection, analysis, interpretation, and knowledge translation.

This project is a collaboration between the Innu Nation, Sheshatshiu Innu First Nation, Labrador-Grenfell Regional Health Authority, Memorial University’s Faculty of Medicine and the Labrador Institute. The research team is co-led by Dr. Russell Dawe (nominated primary investigator, Memorial University) and Jack Penashue (co-primary investigator, from Sheshatshiu). Mr. Penashue will contribute to this presentation through pre-recorded video.

Speakers:

Russell Dawe is a family physician and assistant professor with the Discipline of Family Medicine at Memorial University. He is the Program Director for the Family Medicine Residency Training Program at Memorial University and former director the Care of Underserved Populations Enhanced Skills Program. He works clinically at the Health Sciences Centre’s Family Medicine Clinic and as a palliative care consultant at the L.A. Miller Centre. He is also a senior scientific advisor for the CFPC’s Besrour Centre for Global Family Medicine. His work and research in medical education, program evaluation, Indigenous health and underserved populations includes collaborative partnerships in Labrador, Nepal and Uganda.

Zhuxi (Xixi) Gong is a recently graduated family physician. She completed her medical school education at DeGroote School of Medicine, McMaster University, then came to Memorial University to complete her two years of family medicine residency training in central Newfoundland. Xixi is currently a resident in Memorial’s Care of Underserved Populations Enhanced Skills Program, which includes rotations in Inner City health (based in St. John’s, Newfoundland and including LGBTQ+ health, care of refugees, shelter medicine, addictions medicine and care of vulnerable youths), Indigenous health (based out of Sheshatshiu, Labrador), and International health (virtually based out of Nepal).