Authors: Dawn Richards, Eileen Davidson, Trudy Flynn, Linda Hunter, Gillian Newman, Christine Thomas
“Tokenism”
When you read that word, what does it mean to you? According to CIHR’s “Ethics Guidance for Developing Partnerships with Patients and Researchers” tokenism in research is defined as: “… when researchers include a patient voice in their project, but mostly ignore it.” And unfortunately for patient partners on research teams, many of us have been there and felt tokenism, even if we didn’t know what to call it at the time.
We want this to be a helpful post about tokenism so others can learn from our experiences and hopefully avoid these situations altogether. We’ve put together some of our own experiences, along with some potential solutions for both patient partners and other members of the research team to help mitigate these situations. Keep in mind that patient engagement is still relatively new to research teams, so these situations may not be intentional and we would encourage you to give the research team the benefit of the doubt.
Download .pdf: Tokenism Seeing It Fixing It Scenarios
These are a few examples of tokenism that we’ve come across as patient partners. It’s our experience that members of research teams don’t mean to be tokenistic or don’t know how to address these issues. As patient partners we’ve often found ways to work with the research team to find solutions that work for everyone. We try to keep in mind that people often mean well when they engage patient partners on their teams, and unless they’re told that something isn’t working well, chances are they won’t be aware of it otherwise. This all being said, if you’ve tried your best to find potential solutions and things simply are not working out for you, it is ok to leave a research team – you should not feel pressured to do otherwise. We hope sharing these scenarios will help you in your own work and prevent some of these situations from occurring.
Listen to the Pain BC: Pain Waves podcast episode Tokenism in Patient Engagement, with guest speaker Dr. Dawn Richards for additional insights and advice on how to overcome it.