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.
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.
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
- Centre for Health Innovation (CHI): Interactive Online Engagement Tool
In 2015, Manitoba SPOR SUPPORT Unit, through CHI created an interactive online engagement methods tool to help research teams plan appropriate activities for their patient and public engagement strategy. The tool is, and always will be, completely free and publicly available to health researchers, patients, caregivers, families, communities, health consumer organizations, policy-makers, and anyone interested in learning more about participatory approaches.
- Communicating Clearly with Patient and Caregiver Advisors [ PDF (220 KB) - external link ]
This resource is a plain language checklist to help with communications with patient partners. Developed by Health Quality Ontario for healthcare projects, the reminders on how best to communicate with patient partners is applicable to research projects.
- NIHR | INVOLVE: Resource Centre
INVOLVE, part of the National Institute for Health Research, was a UK national advisory group that brings together expertise, insight and experience in the field of public involvement in research.
- Onboarding Guide for Patient-Oriented Research Teams
These planning guides were co-developed with patient partners of the Saskatchewan Centre for Patient-Oriented Research and intended to help research teams get a good start in working together with patient partners. Onboarding guides are available for patient partners [ PDF (329 KB) - external link ] and for researchers [ PDF (212 KB) - external link ].
- Patient and Public Engagement Planning Template [ PDF (142 KB) - external link ]
This planning template has been created by the Newfoundland and Labrador Support Unit and walks through a number of areas to consider when planning to engage patient and public members as part of research, including the Why, Who, When, What and How.
- Patient-Centered Outcomes Research Institute (PCORI): Engagement Tool and Resource Repository
PCORI is a non-profit, non-governmental organization located in Washington, DC. Congress authorized the establishment of PCORI in the Patient Protection and Affordable Care Act of 2010. This searchable peer-to-peer repository includes resources that can inform future work in Patient-Centered Outcomes Research (PCOR).
- Patient Engagement in Health Research: A How-to Guide for Researchers [ PDF (1.3 MB) - external link ]
In this Guide, the Alberta SPOR SUPPORT Unit identifies five key steps to engaging patients throughout your research project: Why, Who, How, Engage, and Evaluate. The discussion of each stage includes an overview of current evidence, methods of engagement, patient and researcher competencies, tips for engagement, key examples, and engagement tools that can be used to optimize the process.
- Patient-Oriented Research Pathways Self-assessment Readiness Tool for Researchers [ PDF (493 KB) - external link ]
Patient-Oriented Research Pathways Self-assessment Readiness Tool for Patients [ PDF (459 KB) - external link ]
The POR Pathways Project, organized by the BC Support Unit, has focused on learning what competencies (defined as knowledge, skills, attitudes and attributes) are needed by individuals on POR research teams. Their project team conducted a full scoping review of peer-reviewed and grey literature to identify competencies for each stakeholder group as defined by CIHR -- patients, researchers, health care providers and health system decision-makers. Self-assessment tools have been developed that guide patient partners and researchers to assess their readiness to engage in POR and to find online learning resources to acquire competencies.
- Roles for Patient Partners in Your Project [ PDF (499 KB) - external link ]
This short document is provided by the SPOR Chronic Pain Network. The document provides researchers with concrete ideas about ways patient partners can act as co-researchers on teams.
- Take Your Patient Partnering to the Next Level [ PDF (381 KB) - external link ]
This short, easy to read document by Health Quality Ontario gives concrete advice and practical tips to overcome common challenges in partnering with patients. Created for healthcare projects, this information is transferrable to research projects.
- Workbook to guide the development of a Patient Engagement in Research (PEIR) Plan [ PDF (1.03 MB) - external link ]
This workbook facilitates high-quality partnerships between researchers and patient partners undertaking research projects together by presenting guidance for research project teams to plan their activities. It uses the Patient Engagement in Research (PEIR) Framework which includes eight components that outline meaningful engagement in research from the perspectives of patient partners. Created in partnership with University of British Columbia and Arthritis Research Canada.
Budgeting and compensation
- Budgeting Tools
Created and provided by the George & Fay Yee Centre for Healthcare Innovation, this interactive website provides budgeting examples for patient engagement. A downloadable budgeting tool with considerations for all areas of costing out patient engagement is also included.
- Considerations when Paying Patient Partners in Research
This document provides a series of considerations targeting patients, researchers and research administrators interested in paying patient partners in research. This tool is part of the SPOR Patient Engagement Framework.
- New Public and Patient Engagement Budgeting Tool
The George & Fay Yee Centre for Healthcare Innovation (CHI)'s Public and Patient Engagement (PE) team developed this tool to provide guidance in budgeting for meaningful and inclusive patient and public engagement in health research.
- Patient partner compensation in research and health care: the patient perspective on why and how [ PDF (297 KB) - external link ]
This article was written by four Canadian patients about patient partner compensation considerations in research and healthcare. Richards, Dawn P.; Jordan, Isabel; Strain, Kimberly; and Press, Zal (2018). "Patient partner compensation in research and health care: the patient perspective on why and how." Patient Experience Journal: Vol. 5 : Iss. 3, Article 2. doi: 10.35680/2372-0247.1334
- NIHR | INVOLVE: Payment and Recognition for Public Involvement: Cost Calculator
This guide provides practical advice on how to budget for involving patients, carers and the public in research.
- Identifying potential barriers and solutions to patient partner compensation (payment) in research
Compensation of patient partners on a research team may seem simple, but is sometimes met with unintended barriers and challenges. This paper is written by researchers, patient partners, and those who facilitate patient engagement in research, about their experiences with barriers to patient partner compensation and offers some solutions and potential resources to help navigate these challenges.
- Public and Patient Engagement Evaluation Tool (PPEET)
The PPEET tool, published by McMaster University Faculty of Health Sciences, is a series of three questionnaires to evaluate public and patient engagement. The tool was developed primarily for use within health system organizations but has also been used to evaluate engagement within other contexts (e.g. health research).
- Evaluating the Patient Partnership in Research
Patients as Partners in Research: Patient/Caregiver Surveys [ PDF (452 KB) - external link ]
Patients as Partners in Research: Researchers Surveys [ PDF (430 KB) - external link ]
These surveys were developed by patient/caregiver partners on research teams and represent areas they identified as important aspects of their experience. The surveys are meant to be administered throughout the project's course of engagement (start, middle, and end). There are separate surveys created for researchers and for patient/caregiver partners.
- SCPOR Patient-Oriented Research Level of Engagement Tool (PORLET) and Indigenous Research Level of Engagement Tool (IRLET)
Development of these tools was supported by the Saskatchewan Centre for Patient-Oriented Research, which measure the degree to which a project meets the definition of patient-oriented research in the context of non-Indigenous and Indigenous communities, respectively.
- Patient Engagement in Research Scale (PEIRS-22)
A valid and reliable questionnaire for assessing the degree of meaningful patient and family caregiver engagement in research, co-developed with patient partners. PEIRS-22 enables standardized assessment of engagement in research across different contexts.
Theoretical guidelines and resources
- CIHR-SPOR: Considerations when paying patient partners in research
Canada's Strategy for Patient-Oriented Research (SPOR) encourages researchers and research partners to offer payment to patients who act as partners in research and research-related activities. The SPOR Patient Engagement Framework identifies a number of areas for engagement including involvement in priority-setting, participation in governance committees, and consultation on research design and knowledge translation activities. When patients act as partners in research and research-related activities, they are dedicating their time and expertise to the betterment of the overall project in a similar fashion to other members of the research team, albeit, with a different lens. Offering payment to patients who undertake this important work helps make participation in research more equitable and diverse by helping to remove barriers to participation in research. CIHR-SPOR SUPPORT Unit overview
- Engaging patients as partners in research: Factors associated with awareness, interest, and engagement as research partners
Kristine R Hearld, Larry R Hearld, and Allyson G Hall. SAGE Open Med. 2017; 5: 2050312116686709. Published online 2017 Jan 4. doi: 10.1177/2050312116686709
- Patient Engagement and Canada's SPOR Initiative. A Resource Guide for Research Teams and Networks [ PDF (1.07 MB) - external link ]
Abelson J., 2015. This document has been prepared with the objective of supporting researchers, decision makers and other relevant stakeholders involved in a wide range of SPOR-related activities.
- Using qualitative Health Research methods to improve patient and public involvement and engagement in research
Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.
Articles, reviews, videos
- A home for patient-oriented research
“All too often, what's important to patients differs from what health researchers want to study. Patient-oriented research requires a major shift in the way we conduct health research.”
Patrick, K., Kebbe, M., and Aubin, D.CMAJ May 22, 2018 190 (20) E607; doi: 10.1503/cmaj.180587
- Patient-Oriented Research Competencies in Health (PORCH) for patients, healthcare providers, decision- makers and researchers: protocol of a scoping review
Mallidou, A., Frisch, N., Doyle-Waters, M., MacLeod, M., Ward, J., Atherton, P. Biomed Central Systematic Reviews (2018) 7:101. doi: 10.1186/s13643-018-0762-1
- Recruiting patients as partners in health research: a qualitative descriptive study
Lidewij Eva Vat, Devonne Ryan, and Holly Etchegary. NCBI US National Library of Medicine, National Institutes of Health Research. 2017 Aug., 21 v.3 doi: 10.1186/s40900-017-0067-x
- The Power of Conversation
Breslin, M., Mayo Clinic (2013).
“Addresses the essential character of satisfying conversations between patients and providers. Conversation is not a soft skill. It is the essence of Health Care Delivery.”
- The prevalence of patient engagement in published trials: a systematic review.
What meaningful patient engagement looks like, how it benefits research and clinical practice, and what the barriers are to patient engagement. Fergusson, D., Monfaredi, Z., Pussegoda, K., Garritty, C., Lyddiatt, A., Shea, B., Duffett, L., Ghannad, M., Montroy, J., Hassan Murad, M., Pratt, M., Rader, T., Shorr R., and Yazdi, F. (2018). BioMed Central. Res Involv Engagem 4, 17 (2018). doi: 10.1186/s40900-018-0099-x
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.
- Centre for Health Innovation (CHI): Interactive Online Engagement Tool
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.
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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