Building towards consensus on compensation and conflict of interest in patient-oriented research
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 hosted a facilitated live chat on Twitter to gather a range of perspectives from patients and stakeholders. We then analyzed this data and used this to plan and deliver a one-day consultation meeting. We invited key stakeholders from across British Columbia, including patients, researchers and others, to share their experiences and identify key research questions, gaps and priorities
The overarching goal of our work is to foster meaningful collaborations with key stakeholders for the purpose of identifying priorities, values and gaps as they relate to compensation and conflict in patient-oriented research (POR). Specifically, this work is driven by two principal objectives: 1) To examine the perspectives and practices for compensation and conflict in POR; 2) To develop relevant and responsive questions and priorities to inform future consensus building activities and research.
RAISING AWARENESS OF CONFLICT OF INTEREST IN PATIENT-ORIENTED RESEARCH
There has been increasing emphasis on the need for engaged modes of research that address complex health system challenges and improve patient outcomes. The meaningful engagement of patients in research has been hailed as one mechanism improve the relevance, impact, and efficiency of research and POR approaches have been widely adopted over recent years.
In concert with the rapid adoption of POR is the recognized need for robust engagement methods and practices, including fair compensation for patient partners. While compensation is commonplace, there has been ongoing criticism around the lack of transparency of funding practices within research teams, particularly related to the uptake of industry funding and the potential for COIs. This is further complicated by the increasing use of industry funding among patient advocacy groups. To address this gap, our team undertook a MSFHR-funded C2 project and have undertaken a literature review, Tweet Chat, and priority setting activities to explore COI in POR. We found a dearth in literature examining COI in POR, while stakeholders emphasized the need for resources and tools, including checklists, that can be adopted by diverse audiences engaged in POR. To respond to this, we will co-create and mobilize an accessible and comprehensive guidebook comprising resources and tools to support the identification and management of COI in POR. We will adopt evidence-based KT strategies and will collaborative with team members to plan and initiate these activities.
Objective 1: Co-development of Educational Resources To develop our guidebook, we will leverage the findings of our C2 grant research to plan and co-create our guidebook and associated resources and tools. Objective 2: Sharing Best Practices for COI in POR To share best practices for COI in POR, our team will co-present webinars to share the findings of our research to date and promote the guidebook. Objective 3: Increasing ability of key stakeholders to identify and manage COI in POR To determine the impacts of our guidebook and broader research, our team will embed evidence-informed evaluation strategies into our work.
This comprehensive guidebook will be of direct interest to those engaged in POR and will provide diverse stakeholders with practical and usable supports. By creating and mobilizing these evidence-informed resources and tools, research teams will be supported to identify and manage COIs in POR and the potential to promote more equitable, ethical, and quality research practice.
Knowledge Translation Outputs
Click here to read this project’s Evidence Report
Click here to read this project’s Action Report
Click here to read, “A Guide to Tweet Chats for Research” by Iva Cheung, Davina Banner-Lukaris, & Erin Michalak
Additional information on the Deliberative Dialogue process that we use in our research
publications in progress
“Exploring Conflict of Interest in Patient-Oriented Research: A Scoping Review” by Iva Cheung, Haydn Molcak, Shayna Dolan, Jessica Froese, Kiranpreet Ghag, & Davina Banner
