Patient Engagement in Manitoba Video Series: Part 1
Experiences and Motivations
Interviews by Ogai Sherzoi
As the Manitoba Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit, the George & Fay Yee Centre for Healthcare Innovation (CHI) is focused on advancing the science and practice of patient-oriented research. This includes public and patient engagement in health research. CHI defines engagement as patients, families, caregivers, communities, and members of the public having a say in health research decision-making, throughout the entire process — from design and formulating a research question, through to disseminating and implementing the findings.
One of our Patient Engagement Knowledge Brokers, Ogai Sherzoi, interviewed Manitoban researchers, healthcare system decision-makers, and patient partners to elicit their perspectives on patient engagement in health research. Through these four videos, these folks share their thoughts, experiences, and hopes for patient engagement in Manitoba, and the impact of engaging patients and the public in health research on health outcomes, services, systems, and policies.
Question 1:
First, Ogai asked interviewees to share their experiences in patient engagement. Check out the video below to see their answers (transcript follows).
Lorie Deda, member of CHI’s Patient and Public Engagement Collaborative Partnership
“Patient engagement is very important to me, seeing that I was a patient, and how I was treated in the system — we can make a change if we make a stand. So that’s one of the reasons I decided to sit on the CHI committees.”
Thomas Beaudry, member of CHI’s Patient and Public Engagement Collaborative Partnership
“The way you engage in community, with the Indigenous community, is being honest. Don’t go there with any preconceived ideas, go there with an open page, and ask them “how do you want to be engaged?”
Kathryn Sibley, Director of CHI’s Knowledge Translation platform
“One of the projects we are working on that engages people with lived experience is also focused on understanding the perspectives of people with lived experience of a health condition as well. And so this is called the Valuing All Voices project, and we’re funded by CIHR to build on some of the existing frameworks for patient engagement to really help foster and promote authentic, meaningful engagement of people from all health backgrounds. So, trying to more purposefully engage voices less heard in health research. And so in the course of this project, we’re not only engaging people with lived experience as participants in the research, but we also have an individual who represents a number of these intersections as a member of the research team.”
Ashley Struthers, Research Associate in CHI’s Evaluation platform
“One of the ways that we are trying to put it into practice is to include patient engagement as part of the format for our template for evaluation proposals, and so my hope is that by having that included right in the evaluation proposal template, that it will cue each of the members of the Evaluation platform to at least think about that while they’re planning every evaluation, and in that way, we all get some experience with patient engagement and share our experiences with each other so that we become more comfortable and that we’re able to easily involve patients.”
Sarah Kirby, Research Project Manager in CHI’s Health Systems Performance platform
“In the Health Systems Performance platform, we do implement the Choosing Wisely recommendations, and in other provinces, they have engaged the patients and public in a very meaningful way. So in our platform, we hope to expand our diversity of patients and public that are involved in our work by following some of the strategies that have been developed in these other provinces, in these other engagement groups, and also meeting and interacting with some of the advisory committees and groups that are already in place here in Manitoba.”
Leanne Dunne, former Knowledge Exchange Coordinator for the Developmental Origins of Chronic Disease in Children (DEVOTION) Network
“Patient and public engagement is important within DEVOTION because it’s an opportunity to have those partnerships with people who have a very direct link and experience to a health issue. So, the most direct experience I’ve had with patient and public engagement has been supporting a study called iCARE, which is really looking at kidney damage in youth that live with type 2 diabetes. So, we actually have a public and patient advisory group made up of kids and also caregivers who live with type 2 diabetes or care for someone who does. That has been really interesting and important because prior to having that formal advisory group, the focus was primarily on biological risk factors like measuring a1c levels and high blood pressure or sugar levels. But it really goes beyond that when you’re speaking to someone who lives with type 2 diabetes, and we’ve found that mental health and emotional support is such a key factor. And it’s such a priority for our advisory group, and so they’ve actually changed the research approach and they’re using — it’s called a biopsychosocial approach. And they’re starting to look at how risk factors such as stress can have an impact on kidney health in relation to type 2 diabetes. That wouldn’t have been established without having an advisory group reminding us that that’s such an important thing…”
Question 2:
Interviewees were then asked to share their motivations for getting involved in patient engagement in health research. Check out the video below to see their answers (transcript follows).
Dylan Mackay, Clinical Trialist in CHI’s Clinical Trials platform
“I’m pretty sure the main factor that got me interested in patient and public engagement is the fact that I have type 1 diabetes. So, I developed type 1 diabetes when I was a teenager, and that’s really a condition where a lot of the research involves patients and is driven by patients now. The ‘living’ with a condition like type 1 diabetes gives you unique insights into it, and researchers really need to engage with patient populations like that to make sure they have the right outcomes and the right research questions in mind.”
Mpho Begin, member of CHI’s Patient and Public Engagement Collaborative Partnership
“I was already interested in using technology to help patients better manage their health condition, especially for patients living with chronic conditions at home. So, an opportunity came up — there was a posting for patient/public advisors to join the Executive Council for CHI — so I applied, and I was accepted to be a member of the Executive Council. And from that, I got invited to participate in the Patient Advisory Group [Patient and Public Engagement Collaborative Partnership], and that’s how I got involved.”
Kathryn Sibley, Director of CHI’s Knowledge Translation platform
“What got me interested in patient and public engagement is, as a KT [knowledge translation] scientist, one of the core pillars that I practice in KT research is the idea of integrate knowledge translation, which is all about engaging your end-users as partners in the conduct of your research, throughout the research project. So patients — people with lived experience of a health condition, their families and caregivers — these are obviously one of the key end-users of research that we’re interested in engaging to help us conduct better research.”
Gayle Halas, Co-Research Lead, Manitoba Primary and Integrated Healthcare Innovation Network (MPN-PICHI)
“I’ve always been drawn to more qualitative research, and having a face that provides the data — that’s been somewhat helpful. I’m always very, very moved by the stories that patients share, as well as some of the frustrations they’ve encountered. So making sure that they have a voice in the research is fine in terms of contributing one piece of data — but you can imagine that that voice would have a whole lot greater impact in directing the overall research direction. So that’s become a lot more important, and a lot more interesting…”
What are your experiences in patient engagement in research? What are your motivations? Share with us in the comments or on Twitter @KnowledgeNudge.
About the Author
Ogai Sherzoi is a knowledge broker for the Knowledge Translation platform at CHI.
