Patient Engagement in Manitoba Video Series: Part 2
Impact & Aspirations
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.
Missed Part 1(Experiences & Motivations)? Watch it here.
Question 3:
The third part of the interview involved Ogai asking interviewees to share their thoughts on the importance of patient engagement in their own work, and in health research in general. Check out the video below to see their answers (transcript follows).
Jeanette Edwards, Strategic Lead for Community Health, Quality and Learning for Shared Health
“It quickly became apparent to me that patient/public/community engagement was absolutely key if we are going to address issues related to equity; issues related to disparities in health; and also in building healthy and productive communities.”
Pusha Sadi, Project Manager in CHI’s Project Management platform
“Particularly in research, there’s often a gap between what a researcher or clinician would deem as valuable and what a patient thinks is valuable, in either the questions we’re asking or in their own clinical care. Ensuring that patient engagement happens early on helps us define questions that are valuable both to patients and researchers.”
Wattamon Srisakuldee, Special Project Advisor in CHI’s Data Science platform
“I think that the research — especially in the healthcare system — [the] patient voice should be heard, and should be engaged in the research. This is something that I think should become [a] priority. The patients should be [able to] identify their questions. They should have [the] right to know what research is going on, and they should have [the] right to understand the methodology, as well as data interpretation.”
Dylan Mackay, Clinical Trialist in CHI’s Clinical Trials platform
“Patient and public engagement is really critical to clinical trials, I think, because without knowing — without engaging patients or without engaging the public — when you’re coming up appropriate outcomes, or research questions, and things like that —you might have a research question that you think is perfect, and a solution for a problem that you think will work. And if you don’t engage the people who are living, say, a particular condition, you might try and even spend lots of money on developing a solution that won’t work in a real world sense because you’ve tested it in a laboratory, or you’ve tested it in a very controlled trial, and when you try to translate that to real life it doesn’t work. And so that’s where talking to patients or the public can help you avoid those situations.”
Mpho Begin, member of CHI’s Patient and Public Engagement Collaborative Partnership
“I think patient and public engagement is important because as patients, we have a different perspective. I believe that our different cultures, of immigrants and people of lived experience, can bring a different perspective to the solution and be able to work with researchers to kind of collaborate and provide our input on how living with certain chronic conditions can impact our day-to-day lives, and be able to incorporate that [solution] in our daily routine. And by working with researchers, they can kind of understand and be able to come up with solutions that we can incorporate in our daily lives without impacting our routine, because that way there’s a better chance for patients to adhere to their care plan — because that routine’s not interrupted in a way that it will affect their outcome.”
Carolyn Shimmin, CHI’s Patient & Public Engagement Lead
“When we’re talking about patient engagement, we’re talking about partnership, and that means people actually having a say around research decisions — versus with a participant, you’re being actively involved in the research itself. But there is quite a difference between those two pieces.”
Question 4:
To finish up, Ogai asked interviewees to talk about their aspirations for the future of patient engagement in health research. Check out the video below to see their answers (transcript follows).
Thomas Beaudry, member of CHI’s Patient and Public Engagement Collaborative Partnership
“There’s gotta be a direct link between the people that are being impacted by the research, and the people who are doing the research.”
Maya Jeyaraman, Senior Systematic Reviewer in CHI’s Knowledge Synthesis platform
“CHI’s main focus is to involve patients and public with lived experience in almost all research projects that are conducted in the province, and so I think CHI would play a huge role in promoting this process. ”
Roberta Woodgate, Canadian Research Chair (Tier 1) in Child and Family Engagement in Health Research and Healthcare
“I think a lot of this patient engagement so far has been from the adult perspective, and not from that child or that young person’s perspective. So I really would like to advance the science of patient engagement from the child and youth perspective.”
Carolyn Shimmin, CHI’s Patient & Public Engagement Lead
“One of the most important things about the Centre for Healthcare Innovation is that we really want to ‘walk the talk’ when it comes to public and patient engagement in health research, and that’s why we have public and patient advisors on every level of our governance structure. That means we have patient and public advisors on our Executive Council; we have them on our Strategic Advisory Council; we have them on our Scientific Advisory Council; and we have a Patient and Public Engagement Advisory Group [the Patient and Public Engagement Collaborative Partnership] as well, that helps inform everything from our strategic direction…”
“Patient/public partners on the Scientific Advisory Council have a say in some of our core activities in each platform. On the Executive Council they really get to talk about our larger partnerships with other organizations across Manitoba. And our big Patient and Public Advisory Group [Collaborative Partnership] really has a say in a lot of different things, and they’re actually starting to engage with the Patient Engagement Champions; building research priority lists; learning about the different platforms; and really finding ways to actually actively and meaningfully engage them. So at every level of governance we have patient and public advisors who bring their experiential knowledge, that’s so incredibly valuable to all of our decision making as an organization.”
Patricia Halek, member of CHI’s Patient and Public Engagement Collaborative Partnership
“But I’d rather be — you come with me in my shoes, come — I’ll show you how to walk. I’ll show you how to be here, and understand my parents; my fathers; my grandfathers. I think that as a researcher, you need to listen a little more, and let the voices speak. They may be broken words, they may only be a few words, but they’re words that these people need to be able to voice, and you as researchers need to be able to voice those words in your own words — so that your other fellow people understand where [we’re] coming from. Because sometimes, as small communities, we don’t have your words.”
Jeanette Edwards, Strategic Lead for Community Health, Quality and Learning for Shared Health
“That’s where we need persons with lived experience engaged at the research level; at the evaluation level; and at the service provision level. So, as a policy-maker or decision-maker, the whole continuum must be considered.”
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.
