Feature Program: Indigenous Patient Circle
Our Indigenous Patient Circle has been very active in 2019, working with our teams in Diabetes Action Canada to establish research priorities in Indigenous health and diabetes. Over the last couple of months, our Indigenous Patient Circle has gathered to discuss the important challenges among their communities and how our research teams can engage Indigenous Patient Partners in a culturally sensitive and respectful way.
In March, our Indigenous Patient Circle was invited to assist our Diabetic Retinopathy Screening Research program in identifying barriers to telemedicine care in their communities. The discussion was framed from a decolonial lens focussing on nation, community, clan and self, with the current imposed colonial construct of government, band, interprofessional and education/support. This acknowledged the colonial history of diabetes and encouraged the discussion to go beyond the physician office. Eight Patient Partners were part of this discussion representing a variety of nations, geographic locations and experiences. Of the feedback collected, a number of comments resonated among the team, including but not limited to the following:
- Many communities are a significant distance from optometry or ophthalmology care for diabetic retinopathy screening, moreover if a problem is detected and people are referred to ocular treatment from a specialist are even further away.
- Access to medications is also an issue with some pharmacies dispensing medication on a restricted schedule or not having technologies like glucose monitors or pumps on hand.
- Visiting medical personnel in communities offers a significant benefit, but it also affects continuity of care and the relationship building needed to offer care in a culturally safe and respectful way.
- Funding emerged as a huge barrier to specialist care as people are expected to carry the costs of travel (gas/transportation/flights) until reimbursements are received months later.
The discussion also addressed themes related to education, frequency of visits, and availability of health care practitioners, hidden cost of travel, diabetes management and traditional knowledge.
The March gathering also explored opportunities for researchers to partner with Indigenous communities to prevent type 2 diabetes. Seven members of the Indigenous Patient Circle were engaged in the focus group discussion and valuable feedback was collected on how to establish successful partnerships. We learned that it is extremely important for researchers wishing to engage with communities to approach Indigenous partners in a manner that is respectful of their traditions, so personal connections can be established and respectful language, clear objectives and expectations are understood. Partnerships should be equal and should not end with the conclusion of research projects. Instead, researchers and communities should regroup around common values and goals that will have lasting benefit to the communities. The results of this discussion was very informative to our research team and provided valuable insights into respectfully approaching Indigenous communities for their engagement in developing programs for type-2 diabetes prevention.
In April, our Indigenous Peoples Health Program in collaboration with Can-SOLVE CDK SPOR Network hosted the inaugural Wabishki Bizhiko Skaanj (wah-bish-kih biish-ih-goo skaa-nch) learning pathway in Winnipeg Manitoba. The pathway aims to enhance researchers’ and Patient Partners’ knowledge and awareness of histories of Indigenous peoples in Canada and the impact of colonization and racial biases on Indigenous health. It introduces culturally safe patient-oriented research practices with Indigenous communities as partners and helps foster a climate where the unique history of Indigenous peoples is recognized and respected in order to conduct research in an equitable and safe way. This process also involves developing an ongoing personal practice of critical self-reflection, and being honest about one’s own power and privilege, especially as these relate to Indigenous people.
Most people are aware of the significant health and social disparities between Indigenous and non-Indigenous people in Canada. What is also important is the context in which these inequities occur; the way social, historical, political and economic factors have shaped and continue to shape Indigenous peoples’ health. The pathway helps to set the context of why these drastic different health and social outcomes exist, and how patient-oriented research may help to address them.
Wabishki Bizhiko Skaanj was a great success with attendees having gained valuable knowledge on how to appropriately engage communities so that research can be conducted in true partnership.