Not such a long journey

Perhaps echoing the zeitgeist after more than two years of pandemic restrictions, the travel metaphor runs through Maureen Smith’s description of patient engagement in Ontario.

“It’s a journey that we’re on. The first stage was making everyone aware of patient-oriented research, and now we’ve moved to patient-partnered research,” she said.

A patient partner with OSSU for five years and Chair of the Patient Partner Working Group, it was Maureen’s diagnosis with a rare disease in childhood and her “frequent flyer” status with the healthcare system that motivated her to become involved in patient engagement more than 20 years ago. Her passion for patient engagement is infectious as she talks about OSSU’s work and how it has evolved.

“Now we’re at an exciting stage, a critical point. We’re expanding patient partner research to areas where they weren’t traditionally involved – systematic reviews, trial methodology, bench research, core outcome set development and reporting guidelines,” said Maureen. The first stage for OSSU was about creating a culture of patient-oriented research, generating awareness and getting patient partners and researchers onboard. The language has since evolved into patient-partnered research, which emphasizes the role of the patient in the process.

The value of OSSU

Maureen cites OSSU’s decentralized model as a major reason why patient engagement has become so entrenched in Ontario, as well as its success in forging relationships with diverse research groups.  Like a wheel with spokes, OSSU relies on its research centres and its partners for their expertise then shares that expertise with others.

“OSSU excels by its reach, its we’re all in this together mentality. I think it’s very powerful. We all face challenges, do different work but have a common goal,” she said.

What’s next?

The future is about growth, extension and collaboration, according to Maureen.

A priority is to “engage people who haven’t been engaged.” The focus on equity, diversity and inclusion is crucial to welcome people who are underrepresented in research, both as participants and partners, from areas such as pediatrics, mental health, older people, and racialized populations. 

“This is such a huge challenge to get the voice of people who haven’t been traditionally involved [in research]. The challenge is that it needs a lot of resources. How do we make the research world inclusive? That you don’t need a university degree, you’re not entering a specialized world where you need formal science training?”

To ensure that the contributions of younger people and people from diverse backgrounds and experiences are part of the future, she believes strongly in mentorship. As Chair of OSSU’s Patient Partnership Working Group, Maureen insisted on a mentorship role and is mentoring the young incoming chair from whom she has learned a huge amount.

Openness, listening and humility are key in ensuring a range of voices and patient partners.

“Start by admitting what you don’t know. Maybe your team doesn’t know how to engage. Sit down with community leaders to ask what it is we need to do to work with your community members. Be ready to turn preconceived notions upside down. It’s really important to be flexible. Don’t go in with a plan, don’t assume that what works with one population will work with another. We work with parents and we work with youth but use completely different approaches. You need to have openness about what will work. Some people have had very negative experiences in research so we can’t not acknowledge that. It’s about learning.”

The second priority for the future is to ensure patient-partnered research will happen in all areas: systematic reviews, clinical trials, bench science, guidelines and others.

In her work in pediatrics core outcomes, Maureen has seen results, even in research areas not traditionally considered for patient engagement. “When we do the work with patients and partners, the outcomes are more relevant and they see the value of participating in the methodological process, even though outcomes are further out.”

She acknowledges that focusing on the learning health system and how patient partnerships fit in with the existing work is important but says there is a lot of work to be done in this area.

What was her aha moment? “There’s no road map,” she said with a laugh. “Authentic patient engagement will advance and improve when everyone involved is committed to adopting a continuous, mutual learning lens. This includes codeveloping resources and sharing best practices. It’s really realizing everyone is involved – researchers, research assistants, clinicians, the funders – and that everyone needs to embrace it as a continuous, mutual learning experience.”

Parting words

“My view in 10 years is the hope that people will say “how could we not do it? How did we ever do it before without patient partners?” That would be the true test that patient partnership is not a trend and it’s here to stay.”

Maureen hopes that patient partnership in research will be the norm and embedded in the research culture not just in Canada but also in other countries.

Circling back to the travel analogy, she said, “this has lasted too long to be a trend. It’s a train moving forward.”