Insights April 2024


In health research, the collective effort to transform the patient’s role from being research subjects to becoming partners and co-leaders of research is a noble pursuit, one that is supported by nearly every health research funding agency globally, including the Canadian Institutes of Health Research. This shift is transformative, representing an inclusive approach with the potential to generate new, more applicable knowledge not only informed by lived experiences but also truly co-produced by the very people our health systems aim to serve. As we navigate this transition, it becomes evident that while we may “talk the talk” of equality in partnership and decision making, the infrastructure to support deep collaborations that allow us to “walk the talk” is lacking. This gap between aspiration and reality sets researchers and involved patients or community members up for failure.

The patient-oriented research (POR) team at Michael Garron Hospital strives to achieve the vision of research that is truly patient and community centred. By taking a community-embedded learning health systems approach, we partner with patients and community members and include them in each step of the research cycle, from idea generation to dissemination. As embedded scientists within the East Toronto Health Partners (ETHP) Ontario Health Team, we meaningfully engage and partner with community members and organizations to advance the quality, safety, equity, and value of healthcare services across East Toronto, ON.

Recently, we initiated a research project in partnership with Flemingdon Health Centre and The Neighborhood Organization – two community-inspired organizations – to advance the collection and use of health and equity data within ETHP to guide our decision making related to funding and service allocation. We partnered with eight Community Health Ambassadors (CHAs) to collect data; co-design our data collection mechanisms and approaches for outreach; and identify local and cultural barriers to resident participation. CHAs are individuals living in the communities they serve who often play a community leadership or connector role (i.e., well-known volunteers who have lived there for many years), speak multiple languages and represent the diversity of the East Toronto neighborhoods.

Like many other researchers, we had clear intentions with a focused goal – fostering partnership with community members to improve community health, contribute to informed decision making and advance science. But in reality, achieving meaningful engagement and moving beyond tokenism was harder than expected.

Similar to patient-clinician dynamics, the researcher and patient partner relationship is one of strong hierarchy and power differential. Tokenism often happens in the research relationship when researchers are unable or unwilling, consciously or not, to share power or recognize the expertise of their patient partners. This is fed and fuelled by structural barriers such as lack of patient-friendly platforms or requirements during the grant submission process where the patient or community member’s role in a grant might be diminished to a subordinate position and undervalued.

Engaging community members as true and trusted partners in the research process requires a strong commitment to levelling the playing field. This means investing funding and effort in capacity building to support community members to gain the skills and knowledge relevant to the research method and topic.

In our project with CHAs to ensure meaningful partnership in data collection and analyses, CHAs obtained the Tri-Council Policy Statement 2 (TCPS2) and privacy certifications. These requirements are primarily designed for researchers with post-secondary education, are time-intensive and can be overwhelmingly complex. However with adequate support (and a little caffeine), achieving these research milestones is doable. Our capable, motivated and talented CHAs were able to complete the modules with support of our dedicated POR team. The CHAs found the materials informative and they recognized and appreciated the difference between their usual work (i.e., outreach) and research.

To truly bridge the structural and power gaps and move us toward a model of research that is co-designed with people from our communities, we must prioritize the development of better platforms and tools that will enable patient partners and community members to engage in the entire cycle of research. This includes reimagining training programs and grant application processes to be more accessible and patient friendly. By simplifying the language and providing tailored resources, we can empower community members to actively participate in research without feeling overwhelmed or excluded. It also requires investing in capacity-building initiatives within the community. This not only enhances the quality of research outcomes but also fosters a shift in ownership of the research and further empowers the community to not only engage in research as partners but prepares them to co-lead with researchers in the future.

The journey toward a partnership-based approach in health research is not without its challenges. However, by recognizing and addressing the existing gaps in structures and supports so that patients and community members can be empowered to change the paradigm, we are paving the way for a more equitable, inclusive and impactful research. It is time to move beyond tokenism and take concrete steps toward empowering community partners as equal members in the pursuit of better health for all.

About the Author(s)

Sara Shearkhani,MAE, PhD, is an evaluation and equity scientist at Michael Garron Hospital (MGH) – Toronto East Health Network (TEHN) and East Toronto Health Partners (ETHP). Her focus is on building community-oriented learning health systems by employing rapid cycles of evaluation.

Jen Quinlan, MPH, is the CEO of Flemingdon Health Centre (FHC) – a multi-site team-based comprehensive primary healthcare organization in East Toronto. Jen is active in ensuring equity-deserving communities are a key consideration in planning for health system redesign.

Razia Rashed plays multiple roles within the ETHP as a patient, caregiver and engaged community advisor. She is an active member of various committees that focus on healthcare and social services pertaining to the social determinants of health. Additionally, she serves as the primary community ambassador for The Neighborhood Organization (TNO) and recently joined ETHP as a community co-lead.

Simran Isani, BSc, is a research assistant at MGH. With a background in psychology, she supports research projects to enhance healthcare practices and contributes to creating innovative strategies for improved patient outcomes.

Hamna Mughal is a community engagement and recovery worker at FHC. She coordinates the East Effort project funded through Ontario Health under the High Priority Communities Strategy. Hamna is passionate about social justice and advocates for the social determinants of health.

Abdul Rashid Athar is a community leader, an active member of the Community Advisory Council for ETHP and a community health ambassador with FHC. He is also a member of various community groups in Thorncliffe and Flemingdon Park like Residents’ Councils and grassroots leaders groups.

Denise Gokool is a committed community health ambassador who is helping to improve the health and well-being of the individuals she serves in her local communities. She supports residents by speaking with them to address fears, questions and misconceptions about their health and vaccines

Eshrat Meshkat is a community leader and health ambassador who has served her community through consistent volunteering and working with local agencies, including FHC, the Flemingdon Park Ministry and TNO for more than five years. She has been recognized for her community activities and leadership throughout the years. Eshrat is also a member of the Local Champions Network in Toronto.

Farjana Yesmin has been working as a community ambassador with TNO from the earliest COVID period and has engaged with various community works with different organizations.

Sandhya Rani Golla is a community health ambassador in TNO. She is an active member and administrative assistant for climate action projects with the E-Heroes team supported by TNO. Additionally, she is volunteers for Access Alliance.

Shimanta Hrishit proudly serves as a community ambassador at TNO for Thorncliffe and Flemingdon, while also holding the position of a receptionist at the TNO Youth Hub. Shimanta is dedicates herself to uplifting her community and has played a pivotal role in ensuring access to healthcare services. Her unwavering commitment shows through her volunteering hours to support a variety of outreach and community initiatives, all with the aim of fostering positive outcomes.

Shrouq Abdulraheem is a community heath ambassador who works for different projects with the community and promotes the health and well-being of residents, and advocates for clients, especially seniors and people with disabilities.

Jeff Powis, MD, FRCPC, MSc, is the medical director, Infection Prevention and Control and medical lead, Integrated Care at MGH – TEHN, and an assistant professor in the Department of Medicine at the University of Toronto.

Anne Wojtak, DrPH, is the lead for ETHP (Ontario Health Team) and an adjunct faculty member at the Dalla Lana School of Public Health where she teaches leadership, governance and strategy.

Kelly Smith, PhD, is the inaugural Michael Garron Chair in Patient-Oriented Research at MGH – TEHN and an associate professor at the Institute of Health Policy, Management and Evaluation at the University of Toronto.


Be the first to comment on this!

Note: Please enter a display name. Your email address will not be publically displayed