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Equity, reaching underserved communities, influencing policy and practice are common themes and shared priorities of the funders of OSSU’s Phase II. In 2022, four new funders joined the Ontario Ministry of Health (an original funder in Phase I with CIHR) to ensure sustainability of patient-oriented research (POR) in Ontario. They are CHEO, The Hospital for Sick Children (SickKids), Institut du Savoir Montfort (ISM), The Ottawa Hospital Research Institute (OHRI) and St. Michael’s Hospital, a site of Unity Health Toronto.

It was a logical next step for these centres, which place high value on patient engagement in research, to provide significant in-kind support for staff, expertise and resources for this work across the province.

CHEO/The Hospital for Sick Children (SickKids)

Patient and family engagement is rooted in the clinical work of pediatric hospitals, so it was logical for the CHEO and SickKids research institutes to extend funding to OSSU.

“Patient and family engagement is at the heart of the strategic direction for the hospital and the research institute – ensuring every patient has the right to engage in, and benefit from, research,” said Dr. Colin Macarthur, Senior Scientist, Child Health Evaluative Sciences and Co-Lead, Ontario Child Health Support Unit (OCHSU), an OSSU research centre.

“The vision is that we build capacity in patient and family engagement in research at SickKids, CHEO and other pediatric centres across the province.”

He credits SPOR funding and OSSU’s support as critical for patient-oriented research in the province.

“SPOR funding was a major catalyst for patient engagement; engagement had been happening in isolation but funding made it more integrated into the research process – it’s a combination of having people, processes and infrastructure to make it work,” said Dr. Macarthur.

This commitment supports the work of OCHSU, which provides methodological support for patient-oriented research in child health to researchers across the province.

What are the priorities for the future?

Ensuring equity and inclusion in research is both a challenge and an opportunity in pediatric research, one that is very much on the radar.

“A big challenge is engaging underserved populations. I think it’s a difficult challenge but we have the Leong Centre at SickKids which is providing leadership in partnering with communities, in particular, underserved communities,” said Dr. Macarthur.

Future priorities will be about weaving together the work of patients and families and researchers from across the province in a cohesive manner with an integrated, comprehensive framework.  

“The initial goal has been research, supporting patient and family engagement in child health research and we’ve made good progress. The next step is taking patient-oriented research and ensuring implementation so that it influences practice and policy. The grand vision is to have patients integrally involved in a learning health system to improve child health.”

Institut du Savoir Montfort

Institut du Savoir Montfort, located in Ottawa, aims to be the leader in patient-oriented research for Francophone researchers and patients in Ontario.

“Our mission is to champion Francophone linguistic minorities, looking at language and health outcomes, and in so doing advance the health of all Canadians, especially linguistic minorities” said Dr. Sharon Johnston, Interim Co-Chief Executive Officer, Institut du Savoir Montfort (ISM) and a family physician who sees close alignment with OSSU’s patient engagement work.

“It’s clearly a partnership of learning together. There’s an opportunity to share what’s worked, what hasn’t and to ensure voices of Francophone patients are heard. It’s also an opportunity to learn from OSSU and other partners; what are you doing that we can learn from to improve our practices?”

One priority is to build a network of Francophone patients to join research teams as partners not just in the National Capital Region but across the province, something researchers have indicated they want.

“This is an opportunity to work with patient councils in Ontario – I’d be delighted if we could identify and connect more francophone patients to project teams,” said Dr. Johnston, who notes the institute has created a POR guide for researchers and online French training modules for different partner groups.

At Montfort, it is encouraged that all research projects include a patient from the outset, and it is this patient-inclusive approach that they hope to enable across the province with OSSU. Their support of OSSU’s Ontario Francophone Communities Research Initiative (OFCRI) is another way the institute supports Francophone patient engagement in research that can also benefit other linguistic minorities. Dr. Johnston cites a 2022 CMAJ study, funded by the ISM, that showed better outcomes for patients who receive health care in their own language. 

“The study was an obvious, “ah ha” but you had to quantify it, then it opens doors to what else we need to explore. It exploded a whole new research agenda, and I think there will be some really important research building on this.”

Montfort is community

Community and patient engagement is literally part of Montfort’s raison d’etre – it was saved about 20 years ago by its patients and community when it was slated to be closed.

“It’s in the DNA of the Montfort Hospital, to be in partnership with the community,” said Dr. Johnston.

“I don’t know how many hospitals are that committed to its community as it [Montfort] wouldn’t exist without it. It has grown and serves a diversity of patients in French or English. The attachment, that voice, is powerful and needs to be respected. It’s a unique history and when it [Montfort] says it’s serving its community, it really is.”

The Ottawa Hospital Research Institute

For The Ottawa Hospital and its Research Institute (OHRI), it was a natural outcome of their patient engagement work and relationship with OSSU to provide long-term funding for Phase II.

“Having a shared vision is vital for the long-term sustainability of patient-oriented research,” said Ms. Debra Lynkowski, Chief Operating Officer, OHRI. “Our partnership with OSSU was very deliberate and welcome. It gives us an opportunity to promote and elevate patient-oriented research beyond our walls – serving the broader community provincially and nationally. We firmly believe, and have already seen, that patient-oriented research leads to better research studies and better patient outcomes.”

It also aligns with OHRI’s strategic vision, where practice changing research is a priority, and support for the Office for Patient Engagement in Research Activities (OPERA) is key to enabling patient engagement in research and governance.

Core to the commitment is the Ottawa Methods Centre (OMC), an OSSU research centre that has played a huge role in enabling patient engagement in research across the province, and OPERA. The OMC’s Dr. Dean Fergusson is also Scientific Director at OSSU, further evidence that patient-oriented research is embedded in the hospital’s culture.

Ms. Lynkowski says “As Dr. Fergusson has mentioned on many occasions, patient engagement is in our DNA now.  As an example, our Board recently decided that tracking the number of patient partnerships over time would be one of only a handful of metrics used to measure our overall success as an organization. That gives you an idea of the level of our commitment.”

Commitment as a funder includes methods expertise and OPERA support through OSSU’s network including data management, research methods, training, capacity- and knowledge building on how to do patient engagement for OSSU and other SPOR groups.

“The idea behind investment in the Ottawa Methods Centre and OPERA is to help build that capacity, both within the Ottawa Hospital, and with our affiliated institutions. We can provide needed resources and advance the body of knowledge – how do you engage patients in a meaningful way – so that those learnings are eventually fully integrated into organizational cultures.” 

She sees significant value in having a seat at OSSU’s Funders’ Group Table where members have the opportunity to bring priorities forward to the Ministry of Health and ensure integration with Ministry priorities. 

“We see a huge opportunity to continue to build capacity and that’s why we recommitted and stepped up as funder. It’s an exciting journey and the partnerships are key to making transformative changes.”

St. Michael’s Hospital, Unity Health Toronto

It was OSSU’s support of the CLEAN Meds IMPACT Award project, which led to a large CIHR grant, that sowed the seeds for St. Michael’s Hospital to give back to OSSU.

“I think the hospital recognized the importance of patients in the research environment and was impressed at what OSSU accomplished in the first phase,” said Dr. Nav Persaud, St. Michael’s Hospital and OSSU’s Equity Champion. “I benefited from support and capacity building so that led to substantial support in the second phase.”

Supporting patient engagement in research aligns with the hospital’s strategic focus to advance equity. Long known for serving people experiencing homelessness and other disadvantaged people, the hospital network is focused on advancing health equity, including health access, for disadvantaged and racialized people.

As a Canada Research Chair in Health Justice and EDI champion, Dr. Persaud has been thinking a lot about how to tackle this topic in research.

“How do we go from equity as a goal to incorporating it into the research we’re doing, both in research projects that can advance equity and how we actually do equity? For example, how are research staff hired and promoted and are those practices fair?” he said. “We’re trying to identify best practices that other institutions are doing globally so that the research is done fairly and promotes equity.”

The team sees this work expanding across the country as they have partnerships with several provincial SPOR units, and they plan to survey other research institutes about EDI practices to develop best practices for the country.

Lived experience

Central to this work is engaging people with lived experience – of poverty, of homelessness, of racism – in research, using innovative recruitment tactics like those used for CLEAN Meds which might include canvassing disadvantaged neighbourhoods.

“With respect to equity, we’re more likely to do work that actually promotes equity when patients are involved from the beginning,” explains Dr. Persaud. “It’s one thing to talk about it but when the rubber hits the road, it can get lost. Having patients involved from the start can hold researchers accountable and patients will insist that we do what we said we’d do. This is an area where having patients involved makes all the difference.”

And it works. The CLEAN Meds community panel – many members were literally recruited off the streets of downtown Toronto – is still active.

“There was skepticism that we could recruit a panel like that and we’d get good engagement. I think that if it’s still around after 5 years, I’d like to think people are somewhat supportive of what we’re doing,” Dr. Persaud.

Unity Health Toronto

Unity Health Toronto is supporting SPOR researchers and SPOR-supported entities to enhance their work toward improving the health of Ontarians. Patient-oriented research includes SPOR-funded projects led by Drs Jonathon Maguire and Nav Persaud and other St. Michael’s Hospital scientists on topics ranging from health promotion during early childhood to drug policy.

Unity Health Toronto is dedicated to promoting health equity and so we are pleased that this phase of patient-oriented research is explicitly aimed at promoting equity, diversity and inclusion. We continue to support projects that identify best practices for promoting equity through research and in the way that the research enterprise operates.