Building towards consensus on compensation and conflict in patient-oriented research (POR)

Principal Investigator: 

Research co-lead: 

  • Davina Banner-Lukaris
    University of Northern British Columbia

Research user co-lead:

  • Marc Bains
    University of Northern British Columbia Health Research Institute

Team members: 

  • Jennifer Brown
    Northern Medical Program
  • Stirling Bryan
    University of British Columbia, BC Support Unit
  • Alison Hoens
    University of British Columbia
  • Daman Kandola
    University of Northern British Columbia 
  • Haydn Molcak
    University of Northern British Columbia 
  • Michelle Mujoomdar
    Canadian Agency for Drugs and Technology

POR describes the process of involving patients and their caregivers in research, not just as participants but also as collaborators and partners. In response to this, there has been increasing calls for patients to receive compensation for their contributions. However, compensation practices and sources of financial support are varied. Increasing numbers of patients and patient organizations are receiving financial support through industry or pharmaceutical organizations, as well as non-profit advocacy groups.  While this has opened up new opportunities for patients to be involved in research, it is unclear how potential conflicts of interest are understood and managed.

Our project seeks to critically explore the compensation of patients in POR and to gain insights into how conflicts of interest are, and could be, managed. We will first host a facilitated live chat on Twitter to gather a range of perspectives from patients and stakeholders. We will analyze this data and will use this to plan and deliver a one-day consultation meeting. We will invite key stakeholders from across British Columbia, including patients, researchers and others, to share their experiences and identify key research questions, gaps and priorities.

Host Institution: 
University of Northern British Columbia
Year: 
2019