I have been involved in research for the last 15 years as a parent of a neuro-divergent young man. I believe in science, but my participation has always been more about what I wanted the science to achieve. My hope has been that research would help drive change in our healthcare system and in our communities for our kids with disabilities.
Over the years, I have been asked to participate in dozens of research projects for children with autism. But I became increasingly disappointed. There is a significant amount of money invested in learning about our kids’ brains, but there is too often an imbalance at the heart of research.
While we share intimate knowledge about our experiences as parents and allow our children to be studied, the focus sometimes ends up being more about helping researchers earn PhDs or publish more academic articles. Millions of dollars are being invested in health research by governments and donors in Canada every year, but the findings too often do not have a meaningful impact on the communities they are studying.
The good news is that it doesn’t have to be this way. There is a “patient partner” movement working hard to make academic research more meaningful to those with lived experience. But it’s time for this movement to mature.
The Canadian Institutes for Health Research recommends that patient partners be included in all stages of governance, priority setting, developing research questions, “even performing certain parts of the research itself” so that the research is “relevant and valuable to the patients that it affects.” Yet we have much work to do yet to get to a full understanding of what being “partners in research” really means.
For the research to be truly collaborative, it must start first with mutual respect. That means valuing the time and effort of patient partners – be they individuals with lived experience or family members sharing their experiences.
Patient partners should be offered payment for the time and knowledge they bring to a research project – and it should be reflective of their expertise, not just a token $25 gift card, just as everyone else involved in the research project is adequately compensated for their time.
Many research projects lag during the recruitment phase because it is often difficult to recruit people with lower income jobs because they can’t afford time off work to donate to a project. But, if they were compensated fairly, this could change that reality.
In Canada, every research group conducting patient-oriented research has compensation guidelines, but they haven’t been reviewed with an equity lens since they were created. It’s time they reflect the standards of fair practice, as international models recommend, embedded in Canadian labour laws.
We want a diversity of voices with lived experience represented in research, to make it relevant and meaningful to all those involved. This begins with equity and mutual respect.
Sharon McCarry is the Director of Citizen Engagement for the CHILD-BRIGHT Network.