BHI Patient Engagement

On this page you will find information and resources to guide patient engagement in research – whether you are a trainee, researcher, patient partner, or interested in getting involved!

• Patient Engagement in Research 
• Support for BHI Patient Engagement 
• Resources 
• Governance 

BHI uses the Canadian Institutes of Health Research (CIHR) definition of patient or patient partner as:

“An overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends.”

We recognize that people whose identities include “patient” may prefer other words to describe this part of their identity, such as person with lived experience (PWLE), person with lived and living experience (PWLLE), community member, and more. For simplicity, the term patient is used here to refer to people with brain-heart conditions and their caregivers (including family and friends).

BHI also uses CIHR’s definition of patient engagement (PE) which is where

“Patients become patient partners in the project and can be actively engaged in governance, priority setting, developing the research questions, and even performing certain parts of the research itself. This … helps to ensure that the research being conducted is relevant and valuable to the patients that it affects. Patient partners can also collaborate with the research team to summarize or share the results with target audiences (especially other patients) and with policy makers or other decision makers who may apply the results in a health or community setting.”

In addition to being the right thing to do, there are several other reasons why BHI is committed to PE in research, including that it (1): 

• Results in more relevant outcomes being grounded in patients’ input, experiences and insights; 
• Helps ensure the research is done in culturally-safe and respectful ways; and 
• Helps communities and patients see themselves in the research team and in its outcomes. 

Research evidence is starting to emerge about the benefits (and challenges) of PE in research, which also help guide BHI’s PE efforts (2-5).

The PE Cross-cutter aims to guide BHI in engaging meaningfully with patient partners (including family members and caregivers) in:

• Research – as partners in and co-leaders of research projects
• Governance – as committee members
• Operations – as peer reviewers for funding opportunities
• Other activities – such as participating in events, co-producing resources, leading workshops, and more

The Cross-cutter is co-creating guidance and resources to support patient engagement at BHI. Co-created guidelines about inclusion and compensation of patient partners are available. Support on patient engagement is also anyone who is involved with BHI, including for patients wishing to be involved as partners and for research team members collaborating with patients. 

These resources have been compiled to help anyone who is in the PE in research space. They are listed as those which have been co-created with patient partners at BHI and those which are external to BHI (many of which have also been co-created with patient partners and are noted as such).

The PE Cross-cutter is closely related to and works with the Co-production and Knowledge Mobilization Cross-cutter. Knowledge mobilization (KMb) is a science and practice that aims to increase research uptake and inform practice, program, and policy decisions. Co-production heavily overlaps with concepts in patient engagement, aiming to design and doing research with the people, communities, organizations, governments, and industry partners, and tackling real-world problems and providing research-based answers to the people who will use them. 

The Patient Engagement and Knowledge Mobilization Advisory Committee guides the work of these two Cross-cutters. The Committee membership is diverse and reflects many perspectives, including patient partners, trainees, PE and KMb professionals, government, and more. The committee advises on planning, executing, and implementing the Patient Engagement and Knowledge Mobilization Action Plan. The Action Plan includes activities and anticipated outcomes and outputs for these Cross-cutters. This plan is updated and reported on annually. Click here to view the Action Plan.

1. Ethics Guidance for Developing Partnerships with Patients and Researchers. Canadian Institutes of Health Research. 2020; Available at: https://cihr-irsc.gc.ca/e/documents/ethics_guidance_partnerships-en.pdf
2. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89.
3. Belton J, Hoens A, Scott A, Ardern CL. Patients as Partners in Research: It's the Right Thing to Do. J Orthop Sports Phys Ther. 2019;49(9):623-6.
4. Kirwan JR , Hewlett SE, Heibert T, Hughes RA, Carr M, Hehir M, et al. Incorporating the patient perspective into outcome assessment in rheumatoid arthritis--progress at OMERACT 7. J Rheumatol. 2005;32(11):2250-6.
5. Forsythe LP, Carman KL, Szydlowski V, Fayish L, Davidson L, Hickam DH, et al. Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute. Health Aff (Millwood). 2019;38(3):359-67.