Leadership Team:
Christine Thomas, Patient Partner
Famida Jiwa, Osteoporosis Canada
Jacinta Whyte, Canadian Osteogenesis Imperfecta Society
Suzanne Morin, McGill University
Romina Pace, McGill University
Leanne Ward, University of Ottawa

Platform Aims:

  • The importance of meaningful engagement with patient partners and community partners across stages of development and conduct of clinical research is evident in literature.
  • Patient partners are team members with input on priorities, design, recruitment, evaluation, interpretation, and knowledge mobilization. OsNET will have an active patient-partner program and has already engaged a significant number of patient representatives in the formation of this proposal (most recent meeting December 9, 2022).
  • The patient partner program will build on the current group through recruitment, selection, and training of patient-partners across the nation.
  • Additionally, we are engaging in discussions to recruit Indigenous patient partners to address their needs in a cultural safe manner. Following OCAP (Ownership, Control, Access, and Possession) principles as these are interpreted by our Indigenous partners, we will learn from their experiences and empower them to shape the program in the context of their communities’ needs.
  • We will engage patient partners with research teams at the onset of study conceptualization, so that together they can identify health problems and research gaps, set priorities, and develop appropriate outputs.
  • Patient partners will be full and equal members of research teams and the KT strategic platform. Patient support organizations will participate actively in this platform to provide OsNET with information that supports their strategic priorities.
  • Co-applicant Thomas has participated in the recent development of IMHA’s patient-engagement modules. We will partner with IMHA’s Patient Engagement Research Ambassadors and the SPOR networks to continue to develop tools to support patients in the world of bone research and knowledge mobilization.