Looking for answers
The people behind our research are a curious lot. They’re on a passionate quest to find answers to life with SCI, which can bring up interesting questions and often groundbreaking knowledge. We are grateful for them and their good work. Meet some of them!
Dr. Kelly Arbour-Nicitopoulos
Assistant Professor, Faculty of Kinesiology and Physical Education, University of Toronto
Adjunct Scientist – Bloorview Research Institute
As a researcher, integrated knowledge translation means engaging with community partners as well as other key stakeholders throughout the research project. That is, providing stakeholders with meaningful roles at all stages of the research process to enable co-learning and effective uptake of research into practice.
The one project that comes to mind relates to the initial development of some of Heather Gainforth’s PhD research. I participated in several discussions with Peter Athanasopoulos (SCI Ontario), Kathleen Martin Ginis (Director of SCI Action Canada], Amy Latimer-Cheung and Heather Gainforth related to how, at that time, SCI Action Canada could work more closely with SCI Ontario to enhance the dissemination of the SCI physical activity guidelines. These discussions focused on identifying gaps as well as synergies between SCI Action Canada and SCI Ontario. Peter valued the work that SCI Action Canada was doing and was able to help our research team understand the landscape within SCI Ontario and the fit between the existing research of SCI Action Canada and SCI Ontario’s priorities and capacity. From that, one of the projects that emerged was Heather Gainforth’s research on network analysis.
My experience with SCI Ontario has introduced me to the area of integrated knowledge translation (iKT). I was a Post-doctoral fellow at the time, and I mean – IKT was out there, such as in the area of medicine/health sciences, but I don’t think iKT had come to fruition in the area of physical activity. Being part of the groundwork with SCI Action Canada and its partnership with SCI Ontario really opened my eyes to the possibilities of IKT and a potential community-research partnership model that I could apply within my own program of research. I’ve taken all of those learnings and applied them to the area of physical activity and pediatric disability. From that initial experience with Peter, Kathleen, Amy, and Heather, I have tried to apply what I’ve learned and have often put [the SCI Action Canada-SCI Ontario partnership] at the pedestal of what other community partners should be able to deliver on, and the role(s) that they can play within the research process, as well as a researcher what I should be able to deliver. [This experience] really stresses to me the importance of the cyclical nature of research, and how strong research-community partnerships can assist in the integration of theory to practice, and then how what is learned within practice can seed further development in theory. I mean for me now it’s also about… how do we think about having children and youth as stakeholders and partners in the research process, and that’s not necessarily something I had to deal with when I worked with SCI Ontario. But, I think that I’ve taken a lot of the learning from the strong SCI Ontario-SCI Action Canada partnership and how can I apply those lessons into the other areas that I’m researching now.
Dr. Amy Latimer-Cheung
Associate Professor, School of Kinesiology and Health, Queen’s University
Tier 2 Canada Research Chair – Physical Activity Promotion and Disability
Integrated knowledge translation (IKT) is an overall process. It’s a process that if used effectively can enhance the quality of your research being used by the people who potentially could benefit from it. So when I think of the process itself, it would unfold into where the stakeholders themselves are meaningfully involved; they’re given the opportunity to participate meaningfully from the beginning through to the end of the [research] process. However, [stakeholders] may not be involved in all stages, as it may not be relevant to them, or they may not have the expertise to [be involved in a specific step], or might not have the interest to [be involved in a specific step]. So, that’s what I think of as integrated knowledge translation.
Sure, so I think one of the best examples is disseminating the physical activity guidelines for Canadians with spinal cord injury, and that was conducted with Heather Gainforth. We connected with SCI Ontario with the idea that we had this set of physical activity guidelines. Then it was through conversations and meetings with their staff that we developed the strategy to disseminate the guidelines. The guidelines themselves weren’t necessarily a product of IKT with SCI Ontario, but the dissemination and the evaluation of the dissemination strategy was. SCI Ontario developed the idea of how we were going to share the guidelines, and we used that as an opportunity to engage in implementation science to evaluate the particular dissemination approach. So it was kind of like a mixed end-of-grant/IKT example. An example of a project where IKT was used throughout was Heather Gainforth’s network analysis project, where she looked into how the network of partners grew in discussions about physical activity. That research question came very much from our discussions with SCIO staff, and then the tool itself was developed with one SCIO staff member, and the results were interpreted and shared with them, so there’s of an example of a project from start to finish that was fully integrated.
I’ve worked with SCI Ontario really since the beginning of my academic career, and for reasons both in the part of researchers as well as the organization, it really was simply like this vehicle to recruitment. But as we began to better understand their organization and how it worked, we began to understand how our work could potentially fit within the organization and support its goals. Also, really truly, it was the result of getting the right person, at the right place, and at the right time that really fueled our IKT approach. So, it was probably after about five years of working with the organization that we really, on [the researcher’s] part, understood better in terms of how to engage in IKT, and in [the organization’s] part also understand how to work with researchers as well. From there, the work in SCI and physical activity has grown as a result. I definitely would [recommend other researchers work with SCI Ontario], however researchers need to be educated on what the expectations are of working with them. So, not just simply being that recruitment vehicle, but rather a partnership. I think it’s important to make that expectation very clear, and then if you’re willing to make that partnership, and you’re given the right partner within an organization, it can be a very valuable experience. There are some cases where it hasn’t always been good (e.g. going through staff transitioning, specific cases where progress has been really slow), but if you get the right person, it’s an incredible opportunity.
Dr. Shane Sweet
Assistant Professor, Department of Kinesiology and Physical Education, McGill University
Integrated knowledge translation involves researchers working in partnership with people with different expertise from the community, from community organizations, from different businesses, etc. It’s identifying and working with key stakeholders or key knowledge users, and then involving them in the entire research process – extending even from conceptualization, towards interpretation of the data, publication, and knowledge dissemination. So it’s really partnership type work – working together and in teams to optimize and maximize the research potential.
SCI Ontario is currently involved in the larger SCI peer mentorship project, which is a SSHRC Partnership Development Grant. So in that grant we have SCI BC, SCI Alberta, SCI Ontario, as well as Ability New Brunswick. Even from the outset as we were planning and writing the grant, I had conversations with Sheila [Casemore] about the organization’s need [for this research], then identifying peer mentorship as one of their target areas, and highlighting how do we go about identifying the impacts of peer mentorship. In consultation with SCI Ontario and the other provinces, we drew up what the grant would look like, and then researchers on the grant (myself, Dr. Heather Gainforth, Dr. Lee Schaefer) brainstormed. In particular, Dr. Lee Schaefer brought in research ideas from a qualitative standpoint. Our ideas were then presented back to the community organizations where they agreed to and modified some of the research components, and then we wrote up the grant together. So now they’ve been involved in development of a program to try and identify the key outcomes of SCI peer mentorship, with the goal of developing an evaluation tool that can be used by community organizations to evaluate and gather qualitative data on their peer mentorship programs. For example, Sheila and SCIO is co-leading one of the qualitative research projects that we have. SCIO is also involved in Phase 2 as we’re developing a consensus exercise to determine what the key outcomes are for people when it comes to peer mentorship.
It’s so awesome to have conversations with Sheila and other members of SCI Ontario. The insight that they have in terms of their programs, of peer mentorship, of people living with SCI… As researchers, they allow us to think more critically about the work that we’re doing, do research projects that align more with the real-world, and think more about using different approaches. [Every conversation that I have with members of SCIO] is always enlightening as it’s always a learning process. I always learn so much from the insight and knowledge that they have, so… it’s been great and they always help enhance the research from that perspective – from design, even to developing knowledge products and tools. They always make sure their users and their membership are benefitting from the research that they’re collaborating on. It’s always been a pleasure working with them!
Dr. Heather Gainforth
Assistant Professor, School of Health and Exercise Sciences, University of British Columbia Okanagan, Principal Investigator, ICORD (International Collaboration on Repair Discoveries)
Integrated knowledge translation means that we partner at every step of the research process, from the minute that we’re developing the research question, all the way through to dissemination. It means that we’re working with the right research users at the right times so that it is truly partnered in that the research we’re doing is relevant, meaningful, and useful to people. But also, we don’t want people to feel like we’re being tokenistic, or taking advantage of anyone or wasting their time. So, there are moments in time where it’s not necessarily in someone’s best interest to partner, but they should have the option to at every moment throughout the research process. They can decide how they want to be involved, so [IKT] is very autonomy supportive too.
In addition to [my other projects with SCI Ontario], I have primarily and more recently [worked on projects] related to peer mentorship with people with SCI. That [project] came out of asking SCI Ontario what was the next question [after our SCI Action Canada work] that they wanted me to answer. The key question was around peer mentorship, and they actually facilitated partnerships with SCI Alberta and SCI BC as well. So in addition, they helped us to grow that partnership which was really amazing! I actually think one of the other key things about that project that was really beneficial was a new level of mentorship. So in the original [SCI Action Canada] studies, I was the trainee, and it was under Kathleen Martin Ginis and Amy Latimer-Cheung’s research program. And now, I’m the Principal Investigator and my trainees are being trained by the same organizations that trained me. So there’s generations of IKT partnership and mentorship, all while looking at peer mentorship. The SCI organizations came up with the question “What is the magic of peer mentorship?”, which is such a great question, but as a scientist it is very difficult to measure magic. So that’s where IKT becomes really valuable because you actually have to have a conversation about “Okay, so when you’re asking me the question about magic, what are you talking about? What kind of methods could we use to be able to actually dial into what is magic?” That process is how we came up with the ideas of recording interactions, doing Delphi methods to understand what makes a really excellent peer mentor, and then building on some of the work we’ve done in state-space grids, which was a negotiation of “this is a method I’m really interested in, and would this be of value?” In that is this neat process of three studies that come together to think about what is magic. In terms of recruitment, the recruitment was faster than anything we could have expected, and we got more interest in all of the studies than what I would have expected, and I think that’s because it was relevant, useful, and the methods were designed together. The organizations helped us with the analysis through every step of the research process, so we have received feedback on our findings and how we can make those more relevant and useful. Now we’re actually in the process of training SCI peer mentors on the data and telling them about what we learned, and then looking at building capacity with peer mentors in all 3 provinces to actually make a difference.
Oh my gosh, my experience has been awesome! SCI Ontario is near and dear to my heart. I feel like SCI Ontario trained me to be an excellent researcher, and they trained my students to be excellent researchers. They are not just invested in a project, they’re invested in people. They’re invested in clients, and they’re invested in researchers who do work that improves the lives of people with SCI. They’re invested in systems-level change, and for a researcher, there’s nothing better than being able to feel like you’re doing work that actually changes the world.
Dr. Kathleen Martin Ginis
Professor, School of Health and Exercise Sciences, University of British Columbia Okanagan
Professor, Division of Physical Medicine and Rehabilitation, Department of Medicine
Director, Chronic Disease Prevention Program, UBC Southern Medical Program
Principal Investigator, ICORD (International Collaboration on Repair Discoveries
Chair & Principal Investigator, Canadian Disability Participation Project
Integrated knowledge translation means that we are engaging the end-users, whether that’s people living with spinal cord injury or clinicians, right from the very beginning when we’re even thinking about the project. Even before we write the grant – that’s when we should be sitting down and speaking with the people who we think might be potential end-users of the research. Then, we engage with the end-users all the way through from the design of the project, to the grant writing, through to getting the money and doing the project, and then when we’re turning the results into products, tools, and services, we engage with the end-users as well to make sure we’re getting it right, and we’re delivering that information in the format, and in the right time, and to the right people who could use it.
One of my favourite projects was the Physical Activity Guideline Roadshow Project. That’s where we wanted to see if we could take information about physical activity guidelines on the road to the… I believe 22 different offices in Ontario where SCI Ontario is based, to see if we could put on these events and teach people about the physical activity guidelines. I remember Peter [Athanasopoulos] in particular was involved right from the get-go. In fact, it might have even been his idea knowing Peter. That was a great project where we looked at the effectiveness of [the roadshow] as a knowledge translation strategy, and worked with SCI Ontario through the design of that project, through figuring out where we would go, how we would evaluate it, and I really love that project because we got to know so many people throughout Ontario, from SCI Ontario from doing that.
My experience working with SCI Ontario – that will always be really close to my heart because that’s when I fell in love with doing community-engaged research and knowledge translation. We had tried to engage with various partners over the years, including SCI Ontario, and in fairness… it took us a while to find the right person in SCI Ontario to connect with, and you can guess who that was. But when that happened, that’s when the magic happened. SCI Ontario was so supportive around what we were doing about physical activity guidelines, and continuously came up with ideas around how to spread our message, and connected us with the right people in the organization to conduct the research, but then even to expand the research and think about new research ideas. I say now that my best research ideas don’t come from me, they come from the community. And it was that initial experience…in fact for a long time I had on my bulletin board a list of… an e-mail from someone at SCI Ontario who had said “Hey! Here’s some ideas!” And I think I chipped away and worked through most of the ideas on that list. So it was a great experience, I learned a lot. There are still a lot of people at SCI Ontario who have moved on, but who I still continue to work with in their new capacity. I will always be grateful for that opportunity that allowed us to go in there and really dig in, learn how to do community-engaged research, and use that as a prototype with lots of other partners.