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:
- 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)
The project will build and support a network of participants from equity-seeking communities to meaningfully engage in and shape pain research, policy advocacy and practice change.
“Our goal is to embed people with lived experience with pain and marginalization in all our research projects and across all our operational structures – our leadership committee, partnership committee, knowledge mobilization committee and our research project working groups,” Webster said.
“This (SSHRC) grant is really going to help us to push the issue of EDI and patient engagement to the forefront, giving us the resources to hire grad students, and the funds to compensate the people with lived experience for their time, which is really important.”
While this project is particularly important in the chronic pain field, Webster hopes the team’s work will have relevance for other groups and researchers in different areas.
“There are already many issues and problems in what it means to engage patients in research and the way that it’s done. For example, we’re coining the phrase, ‘participant engagement,’ to move away from thinking of people only as patients, which is part of the problem. Within a biomedical lens we think of people as individuals with certain health problems and that misses the broad social context of their lives, and the intersection of their social positioning with their health.”
Nursing professor Abe Oudshorn was a successful co-applicant in a $2.5 million SSHRC partnership grant with Stephen Gaetz, professor in the Faculty of Education at York University and the president and CEO of the Canadian Observatory on Homelessness – one of the largest homelessness research institutes in the world.
SSHRC also awarded insight grants to 43 Western research projects across multiple faculties, including the Faculty of Health Sciences, Faculty of Social Science, Faculty of Law, Faculty of Education, Faculty of Arts and Humanities, Ivey Business School, and the Schulich School of Medicine & Dentistry.
A full listing of recipients can be accessed on the Western Research funding results page.
The SSHRC is the federal research funding agency that promotes and supports research and training in the humanities and social sciences.