Looking forward, looking back

A new research culture in Ontario

Like a seedling that grows into a tree with a network of roots, patient engagement in research has taken root in Ontario, thanks to OSSU.

“The widespread culture of patient-engagement and patient-oriented research wasn’t present before OSSU,” said Dr. Dean Fergusson, OSSU’s scientific lead, in a recent interview. “The culture has grown immensely. “With OSSU came the mandate to build and nurture patient-oriented research across our 14 Centres.

Before the launch of the Canadian Institutes of Health Research’s (CIHR) patient-oriented research initiative and the establishment of OSSU in Ontario, patient engagement in research was conducted in very few institutions by a handful of researchers. However, there was little awareness of its benefits to researchers and the health system beyond the few local centres. The OSSU Coordinating Centre cultivated patient-oriented research by ensuring proper patient engagement expertise and resources were in place, and then building and championing through its IMPACT and EMPOWER awards. The IMPACT awards established the ability to conduct patient-oriented research across Ontario and across different populations from children to seniors.

Eight years later, the perspective, as well as practice, has shifted significantly.

“Ask 10 random investigators and most would now know what patient-oriented research or patient engagement is, but that used to be close to zero,” says Dr. Fergusson. “More and more researchers are involving patients in research from conception to dissemination of findings.”

This widespread awareness, and the connections between research centres and health networks, indicates the massive culture shift. It’s OSSU’s greatest success, in his view. All 14 OSSU Centres across Ontario are integrating patients into their research environment, as are primary care networks like INSPIRE, disease networks like Diabetes Action Canada and others. Centres and organizations are now developing policies to engage patients in research, infrastructure to support researchers find patients and to match patients to research projects.

The foundations OSSU has laid in capacity-building, data platforms, patient partnerships and supporting a learning health system are entwined in these efforts.

What’s next in 2022?

Continuing our journey to engage patients, enhance research, and accelerate research translation, OSSU will champion patient-oriented research through all four of its pillars (Data Platforms, Patient Engagement, Capacity Development and Learning Health Systems) as well as major initiatives, including equity, diversity, and inclusion. Measurement, sharing of best practices and expansion are on the to-do list for 2022. A major priority is to develop sustainable infrastructure across OSSU’s Research Centres and extend even further locally and regionally to all corners of the Ontario health system.

What’s your “aha” moment?

“Patients wanting to be involved. There are many who want to be involved and we need to set up a system to encourage and engage them.”

“I have been surprised and pleasantly so by the uptake of investigators. Once they see the value and the need, they’ve embraced patient engagement and been incredibly receptive, from trainees and early career researchers to senior scientists,” Dr. Fergusson says.

What is the future?

With a strong foundation and infrastructure, patient engagement in research will continue to grow even when dedicated OSSU funding is no longer available as it is now firmly embedded in research culture. Teaching trainees and early career researchers how to conduct patient-oriented research will ensure the next generation continues this work.

“OSSU can’t last forever but we will play a huge role in the sustainability of patient-oriented in the health system and research infrastructure.”