IMHA Patient Engagement Research Ambassadors (PERA)
The Patient Engagement Research Ambassador (PERA) team is an evolution of IMHA’s Research Ambassador group, started in 2003. This group consisted of members of the public who either lived with a condition that falls under CIHR – IMHA’s research mandate or who were advocates for individuals living with those conditions, such as family or community members. The Research Ambassadors met twice a year to share information with the Institute and to take information away to share with their respective organizations and communities. The current PERA members will meet 2–3 times per year, providing bidirectional insights and perspectives from their own lived experiences and those from their communities to help IMHA achieve its goals and priorities.
PERA will represent the patient-oriented research (POR) mandate of CIHR-IMHA, leading efforts to ensure patient oriented research principles are incorporated in relevant IMHA activities and funding opportunities. PERA will:
- Inform IMHA and CIHR of patient priorities in research;
- Inform their respective communities about IMHA, CIHR, and their work with PORA;
- Advocate to benchmark best practice in POR across IMHA’s activities (including priority setting);
- Curate quality POR assets for IMHA and the broader CIHR community and create new POR assets to fill gaps;
- Evaluate the progress of PERA.
George: We’re going to introduce ourselves to get started. Maybe I should go first? I’m George, a senior basic scientist, and my lab studies the biomarkers of inflammation. Over to you, Penny.
Penny: OK, I’m Penny, I was diagnosed with rheumatoid arthritis when I was 22. I’m a financial analyst. And I volunteer with the Arthritis Society and as a patient for first year medical students. I’m really passionate about science and research and I do CrossFit three times a week.
Tom: I’m Tom and I’m in my 4th year of my PhD in Dr. Black’s lab.
Dr. Jean: I’m Dr. Jean, rheumatologist. I have a Master’s degree and protected time for my research. (says to self: “I’ve got to get out of here…”)
George Black: Well, let’s talk about the research. We’re looking at extreme exercisers and non-exercisers and their markers for inflammation and cytokines, like CRP and interleukin IL-6, IL-10 and tumour necrosis factor-α.
Penny: I’m really looking forward to participating. I think this is really helpful to understand the impact of high intensity activities for people who have arthritis.
Dr. Jean: Yeah, yeah, yeah. Well, we have three weeks to the deadline.
Penny: (to herself) Three weeks?! I don’t know about that for me - especially with everything else going on. How am I going to have time to read up on everything? To learn what my role is?....
Dr. Jean: (To herself: I’m not really sure what Penny brings to this. She’s not familiar with my work or the science behind research on arthritis.)
Penny: I don’t know how this applies to research, but I do know people worry about how high intensity exercise affects their arthritis.
George Black: Why don’t we talk about how we could characterize this worry?
Tom: That could be interesting, and we can maybe look at ways to measure that.
Dr. Jean: I think the measures are pretty well documented already - we don’t need to go back there.
George Black: Well, it seems to me what Penny is highlighting would be important to CIHR – with these being patient-reported outcomes and things that really matter to patients.
Tom: I mean this could help us with engagement and encouraging people to participate.
Dr. Jean: (thinking to herself) “Oh, patient-reported outcomes, that makes sense in terms of framing it for CIHR and this competition.”
Penny: I definitely think that if we are measuring things important to patients, there’s other people I know who would be interested in participating.
Tom: I really like that idea. Thanks for your input and personal experience. I really think that will help us with recruitment.
George Black: And I agree, Penny, you’ve got some excellent ideas and you’re super well-connected. Do you still run information sessions for people with arthritis? Could we participate in a session?
Penny: Why not?
Dr. Jean (to herself: Maybe Penny can bring some important information to the table. She seems willing to put in the hard work.)
George Black: Well it seems like we have some good ideas and Tom and I can take and integrate them in to the proposal and share them back.
Dr. Jean: We can add our comments to it and I’m sure this version is going to be much better than when we started this meeting this morning.
Tom: This is a whole new way of thinking about research for me - this is awesome. We’re all bringing a different viewpoint and we’re all figuring it out together, and we’re being accountable for the research dollars and to the people whose lives we hope to help.
Reasons to Engage Patients in Research
IMHA is the first CIHR institute to actively encourage the research community to embrace incorporating patient engagement in the research process and provide the resources to do it. While patient engagement is becoming more familiar – and required – in research projects, many researchers and patients are still unsure why engagement is important. The process can appear daunting and many are uncertain how to begin.
The 4-minute video above, 6 Reasons to Engage Patients in Research, showcases the potential benefits for researchers when involving patients on a research team and throughout the research process. Specifically, researchers can benefit from: new perspectives on the research team; appreciating patient knowledge - both lived and relevant experiences; understanding research priorities and outcomes that are important to patients and their families; opportunities to engage patients’ larger communities with the research; potential new research partnerships; and giving trainees the chance to learn from engaging patients in research.
Please visit IMHA’s Patient Engagement in Research Resources, the CIHR-SPOR webpage, and the CIHR Citizen Engagement Strategy for more information on how patient engagement has been integrated into research.
Other CIHR Patient Engagement Resources
More information about CIHR’s work in these areas can be found at the following websites:
- Citizen Engagement
- CIHR SPOR Publications
- Infographic: Abstract Preparation for Conferences
This infographic was co-created with patients to demystify what conference abstracts are, their purpose, and their main components.
To help us more fully and appropriately engage the Patient-Public Sector, we welcome your feedback including suggestions for relevant links to other websites. For additional information about the Patient Engagement Research Ambassador committee, please contact us at IMHA-IALA@cihr-irsc.gc.ca
- Research Ambassadors Meeting: Halifax, NS, May 23-24, 2018
- Research Ambassador’s Meeting: Montreal, QC, October 31 – November 1, 2018
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