Nursing professor Fiona Webster has received a $2.4 million partnership grant from the Social Sciences and Humanities Research Council (SSHRC) to study the concept and practice of patient engagement in pain research.
Her project, Toward democratization of health: a sociological exploration of patient engagement in chronic pain research, focuses on people who experience both pain and marginalization, and how the absence of their voices in chronic pain research is problematic.
“There’s been an evolution that we should engage patients in research,” Webster said. “While this tends to be a heavily promoted practice, the people who are often engaged in research are white, middle-class and with high degrees of health literacy. That excludes those who are suffering from things such as racism, poverty and who we know suffer the worse effects of chronic pain. That has implications for the types of interventions that are developed and for the way research is rolled out and who it is targeted for.”
Webster, a critical sociologist in the faculty of health sciences, is one of more than 40 Western researchers to recently receive SSHRC funding.
Lesley Rigg, vice-president of research said the federal investment in projects across campus validates the important work Western researchers are undertaking to make meaningful impact in Canada and around the world.
“From policy, to sustainability, to health equity, Western’s social science and humanities faculty are connecting to our communities, building relationships, and helping tackle the grand challenges of our time,” she said.
Achieving equity in pain research
In the movement toward achieving equity, diversity and inclusion (EDI) in health care, Webster’s work is the first of its kind to add an EDI lens to the field of patient engagement in research. It’s also one of the first to undertake studies in the “science of engagement,” studying how and why patients are engaged, and who the participants are.
The five-year project is co-led by Maria Hudspith, director of Pain BC, a leading and equity-focused pain organization.
“We’ve developed really dynamic partnerships between the academic researchers on our team and our community partners,” Webster said. “Everyone in the chronic pain research field in Canada and an international partner, as well, has said, ‘yes we really need to do this work.’ They have a significant presence in the chronic pain space, bring practice and policy expertise and are committed to improving how people with lived experience of chronic pain and marginalization can be engaged in our research through EDI principles.”
In addition to Pain BC, other project partners, who have directed an additional $800,000 in resources to the study, include:
Fiona Webster
Maria Hudspith, director, Pain BC
- Chronic Pain Network (Hamilton)
- Global Alliance of Partners for Pain Advocacy (Washington, DC)
- McGill University
- Association Québécoise de la douleur chronique (Montreal, QC)
- Michael G DeGroote Institute for Pain Research and Care (Hamilton, ON)
- Quebec Pain Research Network (Sherbrooke, QC)
- Solutions for Kids in Pain (Halifax, NS)