Patient Engagement

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.

  • 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 meet every 1-2 months virtually, providing bidirectional insights and perspectives from their own lived experiences and those from their communities to help IMHA achieve its goals and priorities.

    Current IMHA PERA members

  • Patient Engagement Training

    The Canadian Institutes of Health Research’s (CIHR) Institute of Musculoskeletal Health and Arthritis (IMHA) has developed a set of online, self-directed, free modules applicable any research where patient-partners are engaged!

    Course: A How-to-Guide for Patient Engagement in Research

    This course is made up of a number of modules that aim to help patient partners, researchers, trainees, and others on research teams, to do patient engagement in research. The course was developed by IMHA’s Patient Engagement Research Ambassadors, with input from patient partners, trainees, researchers, and others in Canada and outside of Canada. These are the modules that are available in the Course and in in some cases, there are two modules on the same topic, each created for a different audience:

    • Module 1: What is patient engagement?
    • Module 2: The research process: (a) Understanding the research process for patient partners and (b) Supporting patient partners throughout the research process for other members of the research team
    • Module 3: Setting up a research project for successful partnership
    • Module 4: Patient engagement for research teams: (a) Being part of a research team for patient partners and (b) Engaging patients on your research team for other members of the research team

    After completing each module, you will receive a certificate of completion.

    The course is available in English and French, is free, and has been designed for accessibility. While the course has been designed by IMHA, the content is developed for any research area, not just musculoskeletal health and arthritis.

    Watch a 30-second video on IMHA’s new Patient Engagement in Research Training Program

    Setting up a New Learner Account for CIHR-IMHA's "How-to-Guide for Patient Engagement in Research" Training Program

    Start any module of the course

  • Patient Engagement Resources

    Patient engagement in research is an approach that involves meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context, patient engagement may also engage people who bring the collective voice of specific, affected communities.

    While patient engagement is becoming more familiar – and required – in research projects, many researchers and patients are still unsure why this engagement is important. The process can appear daunting and many are uncertain how to begin. The “how-to” resources below provide practical and useful tools for researchers and patients who are interested in incorporating this process into current and/or upcoming research.

    Practical guidelines and resources

    Planning for your research project

    Budgeting and compensation

    Evaluation

    Theoretical guidelines and resources

    Articles, reviews, videos

    Other CIHR Patient Engagement Resources

    More information about IMHA’s and CIHR’s work in these areas can be found at the following websites:

    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 Ambassadors, please contact us at IMHA-IALA@cihr-irsc.gc.ca

    Disclaimer: This Patient Engagement Resource page is offered for general information purposes only. Links to other sites are provided as a reference to assist you in identifying and locating other resources that may be of interest and do not constitute an endorsement of any viewpoints expressed. Content on this site or through any link is provided on an "as is" basis. IMHA and by the Canadian Institutes of Health Research (CIHR) do not warrant or guarantee the quality, accuracy or completeness of any information on this web site or on other sites – nor do we recommend or endorse any organization, work, product, service identified on this site or any other. IMHA, CIHR, as well as their respective employees and agents shall not be liable for any damages, claims, liabilities, costs or obligations arising from the use or misuse of the material contained in this website or a linked site.

  • IMHA’s Blog

    IMHA's blog provides articles on a variety of our community's latest topics and features a category dedicated to patient engagement. If you have an idea for a blog post, please reach out to imha-iala@cihr-irsc.gc.ca.

Reasons to Engage Patients in Research

The 4-minute video below, 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.

Transcript

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.

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.

Date modified: