The evolution of patient partnership

After almost 10 years, the torch has passed from OSSU’s Patient Partner Working Group (PPWG) to the Patient Partner Advisory Council (PPAC,) a new group that will build upon the strong patient partnership foundation laid over the past decade.

“I want to thank everyone who has been part of the Patient Partner Working Group since its inception, and commend all the members for their great work and dedication,” said Dr. Vasanthi Srinivasan, Executive Director, OSSU. “We are happy that several members will continue to be engaged with us on other working groups, on EMPOWER project reviews and through our work with Associated Medical Services (AMS). We look forward to continued collaboration.”

As John Lavis, OSSU lead of the Learning Health System has said, “we’ve started a movement in Ontario” and that movement includes patient partnership in all aspects of health research. OSSU has a mandate from CIHR to lead to a culture change in Ontario for patient partnered research, starting with OSSU’s circle of 14 research institutes and 8 research initiatives, a second circle of SPOR networks and related research groups, surrounded by an outer circle of health and health research organizations.

Patient partnered research spheres of influence

Patient partnership in research is the unique aspect to OSSU’s work and will help to change research culture, and how patients are valued and integrated into the research enterprise.

“We want to mobilize the province to this mission. It’s going really well. Many researchers from outside SPOR are contacting us and this is so encouraging as they recognize our expertise and see us as knowledge mobilizers,” said Dr. Srinivasan.

It’s this movement that OSSU wants to amplify by spreading patient partnership through Ontario’s health and health research services for the future, while creating mechanisms for patient partners to feel comfortable collaborating with researchers.

Roger Farley, Chair, Patient Partnership Advisory Council

“I am deeply honored and humbled to accept the role of Chair of the Patient Partnership Advisory Council for OSSU,” said Roger Farley. “As the new PPAC embarks on this journey to foster patient partnership at all stages of health research, I am keen to advance understanding of the value of patients as full partners in health research. From issue identification to the design, knowledge dissemination and implementation of research, patient partnership must become part of the DNA of all research projects. The PPAC’s objective is to collaboratively work with all stakeholders to ensure the sustainability of patient partnership in Ontario. Health research is beneficial for all Ontarians because illness can affect anyone. For health research to achieve the best outcomes for society, patients must be partners. “

The new group of 5 patient partner members, plus 2 ex officio members, will be an advisory body to the OSSU Coordinating Centre team to help support and sustain patient-oriented research and ensure it informs health care policy. To enable the group to better understand its role and to promote patient partners’ abilities in the implementation of policy and programs, Dr. Noah Ivers is developing a course on implementation science.

“We’re taking it to the next level with this iteration of the patient partnership council. We want to get the rest of the research enterprise beyond the SPOR family to come along and it’s already going well. We’re encouraged by the level of interest from the research sector,” said Dr. Srinivasan.

The committee is keen, with a strategic plan and 2024 workplan already underway as well as an environmental scan of the three research spheres. Stay tuned for updates.