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

    Alumni 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 to 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 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

    Have you completed any of the modules in IMHA's How-to Guide to Patient Engagement in Research? If so, we welcome your anonymous feedback or suggestions. On average, this survey will take between 5 – 10 minutes to complete. Your responses and data may be used in presentations or publications related to the modules.

    CIHR-IMHA Patient Engagement in Research Training Program Feedback Survey

  • 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 Patient Compensation Guideline

    Introduction

    The CIHR-Institute of Musculoskeletal Health and Arthritis (IMHA) is mandated to provide research leadership related to: active living, mobility and the wide range of conditions related to bones, joints, muscles, connective tissue, skin as well as the mouth, teeth and craniofacial region. Musculoskeletal health is critical for mobility, productivity, and general well-being.

    The institute has actively encouraged the research community to embrace incorporating patient engagement in the research process since its inception in 2000 and more recently is providing the resources to do it. Patient is an overarching term that includes individuals with lived experience, including patients, caregivers, family, and friendsFootnote 1.

    These compensation guidelines are for patients who contribute their time and expertise to IMHA's efforts (e.g., members of: the Institute Advisory Board, Patient Engagement Research Ambassadors, committees, working groups, etc. and or for patients who are invited by IMHA to attend and participate in specific events (e.g., launch events, workshops, and meetings). This guideline was developed as a framework to offer compensation to individuals who wish to receive it, recognizing that not all individuals will wish to receive compensation. Payment for expenses (e.g., travel) is not compensation and is reimbursed separately.

    IMHA values flexibility, equity, and inclusion in its approach to patient compensation. This guideline should contribute further to the conversation between IMHA and patients about compensation.

    Types of Patient Contributions

    There are many ways for patients to engage with IMHA, such as: providing input on specific projects or initiatives, attending meetings or events, participating in webinars, being a member of the Institute Advisory Board, being a member of the Patient Engagement Research Ambassadors, being part of a committee, writing blog posts, and more. Some patients will engage in one-time opportunities while others may work with IMHA on an ongoing basis. Within the same event, patients may also do different activities (e.g., attend a workshop vs. give a keynote talk at the workshop).

    Meetings and events may be held via teleconference, videoconference, and in person. For some engagements, materials may require review and preparation in advance. Other opportunities may involve independent work on the patient's own time and reporting back to IMHA or producing specific deliverables (e.g., writing a blog, article or other document).

    The contributions described here are not exhaustive – there may be other ways that patients will engage with IMHA. This document will be updated from time to time if new examples of engagement need to be included.

    What IMHA Asks of PatientsFootnote 2:

    • Declare all actual, potential or perceived conflicts of interestFootnote 3;
    • Respect privacy and confidentiality of all meeting proceedings and attendees, as appropriate;
    • Arrive for activities prepared;
    • Participate in all activities as arranged and provide IMHA with reasonable advance notice if unable to attend the activity (assuming this is possible);
    • Participate in discussions; provide feedback and constructive input; raise issues; ask questions; and solve problems in an open and collaborative manner;
    • Respect all people and their opinions, even if one disagrees with a point of view;
    • Draw upon knowledge, networks, and experience to provide input into discussions and decisions;
    • Act as a champion for patient engagement
    • Communication (if possible) about any accommodations are required or that change due to one's health or life.
    • Withdraw from an engagement if one's health or life needs to take priority, or if the fit does not feel appropriate.

    What Patients Can Expect of IMHA:

    • Respect for their time, experiences, knowledge, and the recognition of the vulnerability that their participation may bring;
    • Virtual options for participation;
    • For meetings: materials provided in advance to provide time for review and reflection, scheduled at times and locations that accommodate the majority of participants;
    • Accommodations for disability and/or health requirements as requested;
    • Openness and willingness to: listen, consider feedback, ask questions, and solve problems collaboratively;
    • A commitment to work with and learn from patients;
    • Understanding that sometimes patients' health and life will not allow them to participate fully and that flexibility to engage will be provided if patients still wish to participate in a capacity that works for them;
    • Provide training and support where/if required;
    • Address and respond to questions and concerns;
    • Compensation for time, efforts, and expertise (if patients wish to accept it);
    • Upfront payment where possible—or timely reimbursement of expenses to participate (e.g., travel and dependent care)Footnote 4
    • A discussion about fit and ongoing involvement in an opportunity, if there are any concerns

    Considerations

    • Compensation for these activities is generally taxable income and it is recommended that this compensation be reported to the Canada Revenue Agency and to Revenu Québec for those living in the province of Quebec; a T4A may be issued.
    • Compensation would be by Cheque or Electronic Cash Transfer in line with the Host Institution's financial processes.
    • Individuals are not obligated to accept compensation.
    • Individuals who are receiving disability payments are advised to see if or how compensation may or may not affect disability paymentsFootnote 5.

    Terms

    • Patients may stop participating in activities or withdraw from an engagement at any time without needing to provide a reason. In this case, compensation will reflect their participation to this point.
    • Patients of all ages may be invited to participate in IMHA activities. If patients are under the age of majority in their province, IMHA may need permission from a parent or guardian to communicate with the patient directly or include them in activities. Where appropriate, IMHA will arrange to include parents or guardians in activities, for example, to support the patient and/or to travel with them.
    • IMHA will review its budget annually and may change the compensation rates or levels of compensation as needed.
    • The guidelines will be applied for all patient activities; the exact amount of and eligibility for compensation for a given activity will be determined in advance with the patient in discussion with the IMHA Patient Engagement in Research Strategy Consultant, and Associate Scientific Director, with approval from the Administrator, Institute Operations.

    Process

    • Before work begins, the patient partner and IMHA Patient Engagement in Research Strategy Consultant will discuss the scope of work, expected time commitment, and expected compensation, in consultation with the Associate Scientific Director. Decisions will be made on a case-by-case basis. Communication will be ongoing and adjustments can be made if, for example, more time is required to complete the work.
    • The process of receiving payment will adhere to CIHR guidelines on the Institute Support Grant and the financial process requirements of the Host Institution, and be supported by the Administrator, Institute Operations (with one-on-one support available as needed). All patient partners must complete a one-time UBC Supplier set up process and for each project/activity, a contract and pro-forma invoice must be signed.

    Compensation rates for time and expertise for patients

    Note: All travel costs and other related expenses (e.g., dependent care) are reimbursed separately (receipts must be kept).

    Activity Level of Engagement Suggested compensation Justification and Examples
    Commitment Responsibility and scope

    One-time activity, e.g., write a blog post or newsletter article, co-present a webinar

    One-time

    Complete a task or take part in a specific activity

    $40/hour for independent work

    If IMHA requests a patient write a blog post, the individual might spend 30 minutes with an IMHA staff member discussing the ideas for the blog post, and 1 hour writing the blog post. Total compensation for 1.5 hours = $60.

    If PERA members (see below) co-present at a webinar or a poster/oral presentation for a conference, there would likely be 1-2 hours of preparation ($40-80) and 1 hour of presentation ($40) for a total of $80-120.

    Participate in an event hosted by IMHA or attend an event as an IMHA patient representative.

    One-time

    Attend or participate in a specific event

    $250 for half-day event

    $500 for full-day event

    If a patient participates in an IMHA workshop, the patient will have documents to review ahead of time, will participate in the event, and may provide evaluative or other feedback after the event. The same would be the case if a patient attends an event as an IMHA patient representative.

    Present at an event hosted by IMHA

    One-time

    Develop and deliver a presentation at a specific event.

    $500 for an approximately 1-hour presentation

    If a patient gives an independent 1- hour presentation at an event, they will spend time preparing the presentation, giving the presentation, and participating in discussion/take questions.

    If a patient spends time attending the full event beyond their presentation day, this will be compensated according to the amounts for half- and full-day workshops.

    Member of a committee or working group with a specific project scope

    Term to be defined, might be a few months to a year

    Participate in decision making by providing recommendations for a subject area or initiative with an Institute-wide mandate

    $200/meeting

    If committee meets once per month ($200/meeting x 6 months) for 6 months and then hosts an event for 1 day ($500), the total is $1,800. This may involve preparation time, some email responses/reading required between meetings plus an event amount (if it leads up to an event).

    Member of Patient Engagement Research Ambassadors (PERA)

    2-year term (option for an additional year)

    Participate in decision-making related to Institute's patient engagement initiatives and direction.

    $200/meeting

    If PERA meets monthly and a member attends all monthly meetings, the amount would be $2,400 ($200 x 12). This includes a 2-hour meeting plus time to read any materials/prepare in advance. It includes minimal required email activity between meetings. Additional amounts for other activities beyond PERA participation would apply.

    Ongoing advisory role

    3-year term

    Participates in decision making and mobilizing; activity has an advisory mandate for the Institute.

    $1,750 per year assuming full participation

    For example, meeting virtually 3 times per year for a half day ($250 x 3 = $750), and in person once per year for 2 days ($500 x 2 = $1000). This includes any preparation in advance of meetings and participation in meetings.

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.

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