Janet is a full-time early career researcher, whose professional career began as an occupational therapist (OT). As an OT, she had worked in partnership with Indigenous communities for some time, and now applies her learnings from these experiences to her work as an academic researcher. Janet commits a significant amount of time volunteering in Indigenous communities to foster and build relationships with community members and create opportunities for research partnerships. Having established partnerships has helped Janet and her research colleagues in setting research priorities that are important to the specific needs of the community. Despite the challenges Janet faces at times with balancing her academic and volunteer commitments, she feels deeply satisfied with her time spent connecting with community members. Janet has noticed that research partnerships within Indigenous communities are becoming more common and that researchers should campaign for defined guidelines and supports to further advance these partnerships. As well, she feels that community members can advocate on behalf of their community to raise awareness regarding local needs and how they can work together to address those needs.
So there's all kinds of roles for community partners in research, and in fact it's really up to them to let me know, I think, like how they want to be involved. And in the example of the Research Ethics Board, yes, she had the whole community placed on - like so we had a few individuals identified as leadership but they represented the community, so that was really nice. I engage some knowledge holders or Elders in the research and provide them with honorariums and acknowledge them in whichever way they feel is appropriate on the research. And these people provide guidance and sometimes they don't want to be acknowledged, which is fine, you know it's really on their terms.
I never do a research study that is not identified by the community as a priority for them, so that's the first step. It's like people need to say this is a problem, partner with us - like let's work together on this. So that's the first piece. I engage knowledge partners or knowledge-user partner community members in the design of the research study. They are engaged in the analysis of the research though sometimes I will hire - I have hired people from the community to work formally as a research assistant, so train them to work as a research assistant, to help with the design and the analysis piece as well.
And then we also reflect the whole research process back to the community, so I'm always visiting like in that volunteer capacity. I have a presence in the community, but then I set up formal opportunities to go and talk about the research that we have underway, just as a way to inform the communities of what is going on. And then of course, at the end, the whole end of grant knowledge translation process, community partners are engaged to do that part as well. And so there's presentations - we develop products that are identified as useful and relevant by community members, we test them out with community members. So there's a whole process throughout the entire research study that community members are engaged in.
But through it all, it's sort of a process of negotiation. There's no assumption that people are going to want to be involved through the whole thing - like it's sort of a trial and error thing as we go on. And it depends on what's going on in their lives – sometimes they just don't have the space and time and they just want to manage things, and that's fine. I go off, I take care of something but then I bring it back and say this is where we're at, is this okay to carry on.
I've always done community partnered work and that's because I come from a profession that has, as its theoretical foundations, client-centred care. So I would say that working in partnerships has been deeply satisfying in that it's sort of like my life's work, in a sense. And I think it's contributing to a broader society that I would like to see in which citizens have a say in how their society is structured, how the health and social systems are structured, how they operate. So it's just deeply satisfying, the partnership work, on a personal as well as a professional level.
I think the benefits are that you are more likely to develop research evidence or knowledge that is useful rather than inapplicable. So people are more likely to use it. So I think that's the big benefit. As me, me as a researcher, personally I benefit in that I learn a great deal from community partners, and so I'm not just part of the research world, I get to be part of the knowledge-user world as well, and that's a huge - I find that to be a huge advantage and a benefit. And also it keeps the research really, really interesting - I never doubt the worth of the work that I do, and that is really helpful.
I'm here talking with you about how I got involved in doing collaborative research. And this actually started many, many years ago when I was working as an Occupational Therapist in the area of Developmental Paediatrics, and I was working with Inuit children and their family, caregivers - their parents and other caregivers and doing developmental assessments. So I would go out to these rural and remote communities and administer assessments that have been developed far from these communities, not with children who came from these environments.
So the assessments were evidence-based in that they weren't appropriate for use in Inuit communities but also these assessments weren't really fair to the children and their families. And so it made me aware of how our healthcare system can fail people who are using it in some instances, and also the need for research evidence. As a healthcare provider I was always looking for research evidence that I could use with clients and that I could see was relevant to my clients but struggling with that.
Yeah, so many years later I went back to school and studied Population Health and got a PhD and all of my research is community partnered - there is always a client, caregiver partner who works on the research and provides governance and leadership in the research because it's really important that we're building evidence that the people that are meant to benefit from the research can use and see themselves in. And so that's why I'm here talking with you today, because that's what I do.