Inclusion, expansion, diversity and mentorship are priorities for OSSU’s Patient Partner Working Group (PPWG). Led by OSSU veterans Maureen Smith, Chair and Vice-Chair Lucie Langford, the group is opening its arms to new members and new ways of doing things.
Mentorship is part of the group’s innovative approach, with Maureen mentoring Lucie to take over as chair when Maureen steps down. Mentorship also extends to the entire working group, as each veteran member is assigned a new member to welcome, support and integrate quickly into their new roles as PPWG members.
“I remember how I felt when I joined. I was a grant reviewer on one of the first national SPOR initiatives; everyone was so experienced and a lot older than I was,” said Lucie, who marks 5 ½ years as a patient partner with OSSU. “It took me awhile to come around to the language, how everything worked. I think with the way the Patient Partner Working Group approaches mentorship, the learnings really come from other members’ experiences.”
With 11 members across Ontario – the largest tally yet – the group’s broader membership outreach has worked, although they would like to recruit more Francophone patient partners and people from northern Ontario. Diversity of members is a priority as people bring varied perspectives and experiences.
Priorities include increasing awareness of the PPWG and patient resources through OSSU’s website, codesigning a resource to connect patient partners and researchers in Ontario, an ethics resource, and continuing the success of their webinar series, hosting sessions on sex and gender-based analysis and barriers to engagement and equity.
Phase 2 of OSSU includes an expanded role for patient partners in governance, patient partner collaboration with the leads of equity, diversity and inclusion to capacity building, and more. The PPWG will continue to support and promote the overall strategy of engaging patients as true partners in health research in the province.
Above all, openness and inclusion are guiding principles.
“We’re not creating an elite group of patient partners; experience is important but we need to offer a full menu for patients who want a few hours of involvement or to be a full investigator on a research project. We’re opening the playing field and aware that there’s value in all kinds of contributions from patients. Our goal is to be as inclusive as possible and to have as many options as possible for involvement,” said Maureen.
Interested in joining the Patient Partner Working Group? Email firstname.lastname@example.org.