Territorial Acknowledgement
The Unité de soutien SSA Québec is located on the ancestral lands of the Abenaki, the Wendat and the Mohawk peoples. These territories are the homelands and have been the meeting grounds and exchange routes to many Indigenous Peoples and nations. May the spirit of fraternity that exists among them serve as a model to our activities and discussions.
Why should Indigenous patients be involved in patient-centered research? Indigenous patient partner engagement or participation in Indigenous health research is a process that involves partnership, collaboration and participation of Indigenous people to enable them to have a say in how research with Indigenous communities is conducted. In the context of Indigenous health, this is particularly important so that researchers can respond to the priorities of the Indigenous communities being studied and conduct research in a manner that is compatible with the interests of the Indigenous communities. It also allows research to be conducted in a manner that respects Indigenous cultural values and beliefs.
Source: O’Brien et al. (2022)
Indigenous Partner Circles
The partner circles are co-directed by Marie-Claude Tremblay (Canadian of colonial descent), Associate Professor in the Department of Family Medicine and Emergency Medicine at Laval University and Alex M McComber (Kanien’keha:ka (Mohawk)) from Kahnawà:ke, Assistant Professor of Family Medicine at McGill University.
The governance of the Indigenous Health Expertise is based on multiple circles of partners: the Advisory Circle and Indigenous Patient Partner Circles.
These guiding principles advocated by the Circle are as follows:
- Inclusivity : The Patient Circle members represent a diverse group of Indigenous Nations, Peoples and organizations living in Québec;
- Flexibility : Patient Circle members contribute fully to Circle discussions and decisions, and to participate to the extent they are available;
- Respect : All Patient Circle members will meet, communicate and action with respect for one another and for every person who interacts with the Patient Circle members;
- Safety : The Patient Circle is a safe space that promotes respectful and honest interactions, cultural safety, training, and education;
- Self-determination : Self-determination of Indigenous patient partners is central to the activities of the Indigenous Health Expertise Program of the Quebec Support Unit. It is important to note that the responsibilities of the members of the Indigenous Patient Partner Circle in patient-centered research can be modified according to the expectations, needs of the patients and capacities of the Indigenous Patient Partner Circle. Therefore, this document is a living document and may be adapted to based on consensual agreement by the Patient Circle members.
- Recognizing wholistic health: Health is viewed from a holistic perspective, which includes spiritual, mental, physical and emotional components
- Receive training to better understand the research environment and the participation of patient partners in health research;
- Reflect as a group and collectively identify the most important needs related to Indigenous health in Quebec;
- Reflect as a group on the best ways to promote cultural safety in care and provide recommendations to decision makers in this regard;
- Participate in offering training for health professionals and workers on the realities of Indigenous patients and cultural safety;
- Be able to offer advice to research teams in Quebec who wish to do research on topics relevant to Indigenous Health.
- Have Indigenous patients as expert members of research teams because of their unique knowledge and perspectives associated with their traditional and community cultures and their experiences in the healthcare and social services system;
- Have Indigenous patient partners able to actively collaborate with researchers, healthcare providers and healthcare decision-makers;
- Identified research priorities based on patient concerns, needs and expectations;
- A working process that facilitates decision-making that respects Indigenous values and beliefs;
- To contribute to the development of a better understanding by researchers of the realities of Indigenous populations and communities, which in turn informs and transforms the way in which health care is planned, developed and administered;
- Generate information and results used to transform Indigenous health care and practice
- Bring together patient partners from diverse Quebec-based Indigenous communities with a variety of cultural and individual experiences related to illness or their experiences with health care or social services;
- Encourage these patient partners’ participation as equal partners in all stages of the research process (development, implementation, ongoing evaluation of research and dissemination of results), governance and decision-making processes;
- Provide a space for patient partners to share their unique perspectives, experiences and knowledge that can lead to innovative discoveries in Indigenous health (nothing about us without us);
- Foster understanding, communication and collaboration among all groups involved through education, orientation and training of patient partners, researchers, health care providers, and policy makers;
- Support Indigenous patient partners through training in the principles of health research;
- Ensure an environment of mutual respect and encourage the participation of the members involved.
- All of these elements constitute the foundations of the Indigenous health expertise program of the Quebec Support Unit, one of the thematic axes of the second phase of the support unit (2021-2026). We will report regularly on the progress and compliance of these elements through feedback from the members involved.
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