Indigenous Voices & Patient Perspectives in Patient-Oriented Research
Written by Renee Greene with Maggie King
Truth and Reconciliation: Our Journey to Equitable, Accessible Healthcare in Saskatchewan is the theme for the keynote panel at the 2021 Saskatchewan Health Research Showcase, co-hosted by Saskatchewan Centre for Patient-Oriented Research (SCPOR) and the Saskatchewan Health Authority. It’s a topic that deserves more attention, and one that is a core consideration in the work SCPOR does. One of the panelists for this keynote event is Patient Partner and Indigenous advocate Maggie King, who acknowledges, “there are concerns living up in the north and having limited access to healthcare. When people are sick, they get shipped to Saskatoon or PA. They can’t be close to family when there is a health crisis, and COVID just delays critical attention. COVID has highlighted inequities in the healthcare system.”
For years, Maggie has been a staple at SCPOR. She brings her wealth of knowledge, gained through lived experience, to both SCPOR’s Patient Partner Advisory Committee and SCPOR’s Indigenous Health Advisory Council (IHAC). She gained first-hand experience on a patient-oriented research (POR) team when she joined Dr. Gary Groot’s research team as an Indigenous Patient Partner. From there, she was soon emersed in countless projects with SCPOR, making a positive impact within the organization and beyond.
When she first started working with SCPOR, she and other Patient Partners were invited to look at grant proposals and provide feedback on whether the projects were patient oriented. Without a tool to assist, the criteria were often difficult to compare. Says Maggie, “we determined that we needed a plan to gauge the level of patient engagement. When SCPOR developed the PORLET [Patient-Oriented Research Level of Engagement Tool], we could look at proposals and slot in where they ranked. It was more equitable than ranking projects arbitrarily.” Since the PORLET was developed, it has been used by research teams as a way to gauge their research project’s adherence to key criteria for patient-oriented research.
Maggie was part of the SCPOR grant application writing team for phase 2 funding, and her partnership on the team ensured patient and Indigenous priorities were addressed in the grant proposal. She also played a pivotal role in the development of the Best Practices for Virtual Patient Engagement Infographic, which was established to ensure the transition to virtual meetings due to COVID restrictions did not limit Patient Partner participation. That document was shared nation-wide and even translated to French to ensure a wider audience would benefit from its content.
Patient-oriented research ensures that those who are most affected by the research have a voice at the table. SCPOR supports the same for Indigenous research, while including the community voice as well. When SCPOR, in partnership with Indigenous Peoples’ Health Research Centre determined a need for the Indigenous Research Level of Engagement Tool (IRLET) to accompany the PORLET, the IHAC called on committee members to review their work and offer suggestions for improvement. Says Maggie, “there’s a protective value because historically, Indigenous people have been under the microscope and researched, without the findings going back to the community for approval or review. OCAP™ states that communities need to be involved and the data that’s generated from research belongs to community. It’s created a whole different avenue for Indigenous research, and the IRLET helps us identify research projects that ensure Indigenous people and communities are involved at every stage.”
But there’s more that needs to be done, and Maggie is an active participant in seeking positive change. “We need to be brave about the racism in Saskatchewan,” says Maggie. “I wasn’t as vocal before as I am now, but death by a thousand cuts changes that. Racism is going to continue to thrive if people don’t openly oppose it – we need to find courage to stand up and speak against it.”
As an Indigenous Patient Partner on a research team, Maggie regularly refers to the knowledge she has learned through other Indigenous leaders, such as two-eyed seeing (Elder Albert Marshall) and creating ethical space (Elder Willie Ermine). “I always consider these when I’m sitting on a committee with non-Indigenous people.” She emphasizes the need to speak up and encourages other Indigenous representatives on research teams to do the same. “If I don’t speak up, that time’s not automatically going to be given to me, and I can’t expect anyone else to make space and say what needs to be said. It’s daunting because you know the people [on research teams] – these are their lives, but I don’t work in the field. I have to rely on my own experience and the things I have lived through to inform my opinion.”
She also reminds teams of how culture plays into the way we all communicate. “Remember that we don’t often speak up as much as we want to. We listen first and then talk; we have two ears and one mouth, so we listen twice as much as we talk – a valuable teaching I learned working with residential school survivors.” On the other end of the spectrum, Maggie cautions against expecting too much. “Sometimes it’s hard when you come from a different cultural background because there are expectations that you can answer their questions without them doing their own hard work to learn.”
But that doesn’t sway her opinion on the importance of including Indigenous people on the committees. “It’s important to realize that we have different experiences in our lives because of our culture and the colonial processes that have impacted our communities. Often, we don’t even realize the impact because it’s been there for generations.
“I think the Truth and Reconciliation has really moved the needle and made a big impact. But because it’s so raw and recent – the people that went to residential school are still alive and carry that trauma with them – it impacts our health. We have to understand how trauma and intergenerational trauma continue to impact us. I’m happy to be part of the changes being made and looking forward to seeing research move in the right direction.”
While she has given so much of herself, Maggie has found personal rewards in her work with SCPOR, as well. A university graduate, she always wanted to pursue a master’s degree, and while she has yet to achieve that goal, Maggie has found that working with SCPOR and health research teams has allowed her to continuously expand her knowledge in new ways.
And so, as Maggie contemplates stepping back her volunteer hours to spend more time in her own career and with her family, SCPOR applauds her for the generous gifts of time and knowledge she has shared and for the positive impacts she has made in both patient-oriented and Indigenous health research.