How to avoiding tokenism, and focus on shared decision on a research partnership?

By Heather Gainforth Prof. UBC and Chris McBrige Executive Director Spinal Cord Injury BC

What are the conditions for promoting shared decision-making among stakeholders and avoiding the tokenism of parties in order to lead to relevant and productive research?

Subtitles available
LSQ Version - Quebec sign language


I’m here today with one of my most longstanding partner, Dr. Chris McBride, who is the executive director of Spinal Cord Injury BC. Chris was part of the partnership that I coled to create the first Integrated Knowledge translation Guiding Principles for conducting and disseminating spinal cord injury research and partnership. Chris, when we created those principles, one of our key goals was making sure the principles supported meaningful engagement, that they combatted tokenism, and that they helped with shared decision making so that we would have relevant and useful research. Chris, how do we actually take those principles and enact them so that we get to those key outcomes? Yeah. And that’s always tricky business. And it’s, I think, different for every context. But I think, Heather, the way that you initiated our partnership way back when you came to me and you asked a simple question, how can I help? And that really just opened a conversation about interest from Sponsored Injury BC and the type of work that we do and where it could meet the type of research that you were doing. It was an exploration of where Sponsored Injury BC’s expertise and your research expertise to come together around a mutual opportunity to develop research questions and move on from there. And I think another critical thing was about that you came early. It allowed the exploration, but you also gave us the agency to have influence over the past, that the research we were exploring was headed. And if we would make a suggestion for a change in the direction of a research project or protocol or whatever, there was a willingness to listen to explore why that change might be important, and then a genuine willingness to make the change if it made sense for the project. Exactly. Chris, at the end of the day, we want to make sure that the partners, both the researchers and the research users, have agency, that everybody has decision making power in the research. So that means that the research user gets to influence what’s happening in the research, and it also means that the researcher gets to influence what’s happening in the research. And if for either of us that partnership isn’t meaningful or relevant or useful, then maybe that’s not the best partnership for us, because at the end of the day, the partnerships that are going to work for people are partnerships that are relevant and useful to everyone involved. Exactly. And I think respect is a really important part of all that and respecting the expertise and experiences of all people involved in the partnership. And also partnership is critical to that and critical to being allowed to have the agency to influence the project and make sure that it’s meaningful and relevant and of value.