Ovarian Cancer Canada’s Patient Partners in Research (PPiR) is a national volunteer-based program that trains and connects individuals with lived ovarian cancer experience to diverse research opportunities, to maximize the clinical relevance and real-life impact of ovarian cancer research in Canada. A steadily increasing demand for patient partners to be involved as research team members and decision-makers led us to co-develop with the PPiR team a series of “best practices” for researcher–patient partnerships.

This framework formalizes our evolving approach to patient engagement from 2020-2024 and begins to address challenges that can arise in research settings focused on less commonly diagnosed yet significant and fatal diseases such as ovarian cancer: (1) Start early; (2) Foster collaboration among the entire research team; (3) Establish expectations and communicate regularly; (4) Report impact of patient partner contributions; (5) Ensure adequate resources.

While there are ongoing challenges associated with patient engagement that need to be addressed, data collected from an anonymous survey of Canadian ovarian cancer researchers show a marked improvement in perceived benefits of patient engagement over time and validate the best practices presented herein. Developed in the context of ovarian cancer research, these best practices can be adapted to a variety of health research settings with similar challenges.

The following PPiR team members were involved in the co-development of this framework (alphabetical by last name; province of origin in brackets):

• Yelena Aizenberg (ON)
• Teresa Arthur (NS)
• Erin Barrett (BC)
• Karen Bemister (ON)
• Anne Chase (SK)
• Starla Fiddler (SK)
• Anne Goodbody (ON)
• Sylvie Halde (QC)
• Sylvia Horn (MB)
• Martha Hoyt (ON)
• Shannon Kadar (ON)
• Pauline Joly de Lotbiniere (BC)
• Petra Kaufmann (MB)
• Lisa Making (AB)
• Tiffany Morin (AB)
• Julie Mulligan (ON)
• Alvina Nadeem (QC)
• Julee Pauling (ON)
• Donna Pepin (ON)
• Peggy Pickett (ON)
• Nancy Pomerleau (QC)
• Dana Pritchard (SK)

We would like to acknowledge the significant and enduring impact of former members of the PPiR team who did not participate directly in this process but whose experiences and insights helped shape our program: Linda Brown (NS), Brenda Bush (SK), Marise Daigle (QC), Cecile Hryhorczuk (QC), Diane MacCormack (BC), Wendy Pejic (ON), Patricia Pitts (BC), Colleen Tkachuk (SK), Livia Ujj (ON). This work is dedicated in loving memory to Linda, Brenda, Marise, Cecile, Wendy, and Colleen.