News

By Kim Barnhardt

For Roger Farley, the seeds of patient partnership in research were planted years ago. Chair of OSSU’s Patient Partnership Advisory Council (PPAC) for the last 4 years, Roger’s interest in the role of patients in research was sparked by a presentation from Mr. Vincent Dumez, now co-director of the Patient Partner Programme at the Faculty of medicine at the University of Montreal. In a health policy role at Health Canada at that time, he was impressed by the impact that patients can have in research to improve the health system. Roger learned later that Mr. Dumez was nominated Knight of the Ordre national du Québec for what is known as the “Montreal Model” for patient partnership.

“I remembered that powerful presentation when about 4 years ago when I received email from Maureen Smith, OSSU’s a long-time patient partner champion and advocate about an opportunity to join OSSU as a patient partner,” said Roger. “Not long after I joined OSSU, I was honoured to be asked to chair the group even though I had limited experience as patient partner.”

For the last two years, PPAC has been advising OSSU on creating a sustainable patient partner culture in research. The first year of PPAC was essentially a discovery phase in which the group conducted a survey into patient partnership at hospitals and institutions across Ontario to determine what types of partnership were occurring, how formalized were activities and more.

“We discovered there is no unique model for patient partnership and that it’s very diverse. In some institutions, patient partnership is formalized with policies and support staff while in other there are ad hoc or project-by-project patient partnership approaches, and it was the same thing when it comes to compensation,” said Roger.

“The recent World Café Conversations – another OSSU initiative – were enlightening to deepen understanding of patient partnership. It became clear that there’s no unique model for patient partnership across Canada.  We learned that the World Café model —delivered through three sessions over a four-month period—demonstrated the value of this virtual dialogue. Bringing together diverse perspectives from researchers, research administrators, and patients and caregivers, the initiative fostered a rich dialogue that generated innovative, practical ideas to support the long-term sustainability of patient and caregiver engagement in research.

We learned from patient partner feedback, across Canada, that compensation is an issue. There are no national or generally accepted guidelines, and it is up to each institution and researchers to develop their own. One hospital might give a coupon, another a different perk and there is no standard to measure and evaluate the work done by patient partners.”

The World Cafés also uncovered practical roadblocks for patient engagement in research. Activities that are routine for researchers, like using a web portal or a specific software, can pose learning curves for patient partners and be an impediment to patients telling their stories. Representing the broader Canadian population and its diversity in research is also an issue when it comes to recruiting patient partners from various backgrounds.

“There are a lot of people who are left out – if you are homeless, have mental health issues, are from different cultures – it requires more effort from researchers to reach out to increase representativeness. Some institutions can support their researchers to do this as they have tools and resources, but we learned that in some cases, it’s up to the individual researchers as there is limited support from their institutions,” Roger explained.

To address this, OSSU developed tools and training modules that have a significant impact.

Looking at the future, Roger sees that OSSU can have a role in co-developing a policy paper and guidelines for patient/caregiver partnership in health research, and launch a conversation on how best to implement them. “This could assist the research community to connect with different communities, associations, community centres etc. to achieve greater diversity. A clear policy and guidelines can assist in building links, for example, with community centres or association who are offering services and present opportunities if anyone is interested in being patient/caregiver partners in research.”

He is keen to move to the next phase, primed with learnings from earlier initiatives.

“Now it’s time to transfer into action what we learned from the survey, World Cafés and more to build a plan with priorities. The next phase for PPAC would be taking stock of what we know, make list of what can be done next, prioritize a few actionable items and prepare a workplan,” said Roger.

In addition to hands-on work with OSSU, Roger is involved in programs at Monfort, Ottawa’s Francophone hospital, and with a research program at the University of Toronto examining how the health system can learn from, and improve, lived experience. He is also a project team member on a research project at the University of Ottawa on osteoarthritis in older adults. As well, he was part of a team that created a cartoon, presented at the 2025 OSSU Research Day, to illustrate the learning health system.

Actively involved in education, Roger has been a guest speaker at Monfort’s Research Day and spoke about OSSU’s work at a University of Ottawa symposium. He will serve as a board member for Monfort’s new family health team at the West Ottawa Community Centre where the clientele hails from many countries. And because he still has some spare time, he joins the OSSU Operational Management Team while continuing on as a member of the PPAC.

What motivates him?

“I’m passionate by the fact that the health system and researchers can involve people with lived experience. I think this is very important as we’ve seen there are better outcomes.  I profoundly believe this leads to better research.”

Find a related article about OSSU’s COFFRE initiative (Communautés Ontariennes Francophones Facilitant la Recherche Équitable) to engage Francophone patients across Ontario and another on their research day.