Innovation in Participatory Engagement Research

Fiona Webster is a critical sociologist and Associate Professor in the Labatt Family School of Nursing at Western University and holds a cross appointment with the Institute of Health Policy Management and Evaluation, University of Toronto, where she is also an Academic Fellow with the Centre for Critical Qualitative Health Research (CQ). She has successfully led many Tri-Council funded, interdisciplinary research teams with a particular focus on applying sociological approaches to understanding and improving care, with a particular focus on chronic pain and marginalization. By turning a sociological eye to the challenges of providing chronic pain care within parameters currently delineated by the Canadian health care system, her aim is to identify structural and ideological components of contemporary health care that might be amenable to change.

Therese Lane brings her lived experiences to many different areas of research and healthcare. Living with pain and arthritis since her mid-teens, she is a Steering Committee member with the Canadian Arthritis Patient Alliance and is actively involved in Creaky Joints’ Canada-based efforts. She is a patient partner with a number of different research projects and initiatives including the Chronic Pain Network, PEPR, and the Canadian Pain Society’s Equity, Diversity and Inclusion Committee. Her experiences with living with pain and arthritis have led to her helping others understand and see how pain treatment is not always reaching the people who need it most, including marginalized communities. Her history of active addiction and untreated mental health issues have made her aware of the stigma, judgment, and barriers faced by those who wish to access appropriate treatment for pain. Like many individuals with lived experience, Therese brings her perspectives to the table in hopes of helping others.

Desmond Williams is a community healer and TRE practitioner, stand-up comedian and writer living with complex pain whose work is grounded in the culture, music, dancing, laughter and storytelling of his upbringing with the traditions of the Nlaka’Pamux First Nations and St. Vincent & the Grenadines.

Desmond’s work explores healing practices for People of the Global Majority, and how to foster the care and support needed to explore the depth of living this existence safely and effectively with others.

Ocean Rain is a queer, disabled, and neurodivergent activist and artist living in Tkaronto. They bring to the project their lived experience with disability and chronic illness/pain, as well as experience in grassroots community care and activism. They have a scholarly background in critical disability studies and a passion for critical social research. Previously, their work has focused on experiences of people with service dogs, an area of interest which stemmed from having a service dog of their own for several years.

Through mutual aid practices, Ocean has gained insight into some of the ways in which individuals, institutions, and systems practice care (and fail to). In their art work, they explore their experiences of disability and queerness through spoken word poetry and illustration. They aim to bring a disability justice lens to everything they do, and are passionate about bridging the gap between critical research and the communities it engages with.

Dr. Kathryn (Katie) Birnie is a Clinical Psychologist and Assistant Professor in the Departments of Anesthesiology, Perioperative, and Pain Medicine, and Community Health Sciences at the University of Calgary where she leads the Partnering For Pain program. She is the Associate Scientific Director of Solutions for Kids in Pain (SKIP), a Canadian knowledge mobilization network working to improve evidence-based children’s pain management through coordination and collaboration. Dr. Birnie joined Alberta Children’s Hospital as a medical psychologist in 2018, where she continues to provide clinical care through the Vi Riddell Children’s Pain and Rehabilitation Program.

Dr. Birnie is a recognized leader in pain research and patient partnership, for which she has received national and international accolades. She was the recipient of the 2020 Pain Awareness Award from the Canadian Pain Society and was selected as a 2020-2021 MAYDAY Fellow, a prestigious fellowship focused on communications and advocacy for improved pain care. Dr. Birnie’s more than 65 peer-reviewed scientific publications span the knowledge-to-action continuum to improve the prevention, assessment, and management of pain experienced by children and their families. Dr. Birnie is chair of the national working group developing a standard in pediatric pain management in Canada with the Health Standards Organization. Her research has been featured in media outlets including CBC News, CTV News, Radio Canada International, and The Globe and Mail. Dr. Birnie advocates for patient and family partnership and multi-stakeholder engagement in health research, health care delivery, and health systems design.

Maria joined Pain BC in June 2010 as the inaugural Executive Director. With two decades of experience in community development and systems change, Maria has worked to bring Pain BC from concept to reality. Her work has involved mobilizing communities, engaging patients in organizational decision making, and advancing progressive agendas through policy change and program development. She is one of 15 Principal Investigators in the CIHR-funded Chronic Pain Network, the first national pain research network in Canada, and is the co-lead for patient engagement in the Network.

Maria is also the co-chair of the Canadian Pain Task Force, which was formed by the Government of Canada in March 2019 to assess the current state of pain in Canada and to recommend an improved approach to addressing pain in our country.

Dr. Buchman's program of research explores ethical issues at the intersection of clinical practice and public health. His primary areas of research interest include ethical issues related to chronic pain, substance use, and mental illness. His research draws upon a transdisciplinary toolkit of conceptual and empirical research methods including conceptual bioethics, theory-driven qualitative interviews and focus groups, surveys, and knowledge syntheses.

My research is focused on exploring underserved populations’ access and navigation of health and multi-sectoral services with a particular focus on racialized, migrant and Indigenous populations.

Dr. Craig Dale is an Associate Professor at the Lawrence S. Bloomberg Faculty of Nursing. He is also a CIHR IMHA Embedded Clinician Scientist in Oral Health at Sunnybrook Health Sciences Centre (Toronto) and a Scientist at the University of Toronto Centre for the Study of Pain (UTCSP). Dr. Dale’s research focuses on fundamental patient care for acute and chronically critically ill adults including oral hygiene, pain, and communication. He specializes in qualitative, mixed-methods, and patient engagement research approaches.

Dale is the recipient of the 2017 RNAO Leadership Award in Nursing Research and the 2017 Sigma Theta Tau International, Lambda Pi-At-Large Chapter, Dorothy M. Pringle Award for Excellence in Research. Craig teaches in both undergraduate and graduate nursing programs.

Dr. Craig Dale is an Associate Professor at the Lawrence S. Bloomberg Faculty of Nursing. He is also a CIHR IMHA Embedded Clinician Scientist in Oral Health at Sunnybrook Health Sciences Centre (Toronto) and a Scientist at the University of Toronto Centre for the Study of Pain (UTCSP). Dr. Dale’s research focuses on fundamental patient care for acute and chronically critically ill adults including oral hygiene, pain, and communication. He specializes in qualitative, mixed-methods, and patient engagement research approaches.

Dale is the recipient of the 2017 RNAO Leadership Award in Nursing Research and the 2017 Sigma Theta Tau International, Lambda Pi-At-Large Chapter, Dorothy M. Pringle Award for Excellence in Research. Craig teaches in both undergraduate and graduate nursing programs.

Dr. Craig Dale is an Associate Professor at the Lawrence S. Bloomberg Faculty of Nursing. He is also a CIHR IMHA Embedded Clinician Scientist in Oral Health at Sunnybrook Health Sciences Centre (Toronto) and a Scientist at the University of Toronto Centre for the Study of Pain (UTCSP). Dr. Dale’s research focuses on fundamental patient care for acute and chronically critically ill adults including oral hygiene, pain, and communication. He specializes in qualitative, mixed-methods, and patient engagement research approaches.

Dale is the recipient of the 2017 RNAO Leadership Award in Nursing Research and the 2017 Sigma Theta Tau International, Lambda Pi-At-Large Chapter, Dorothy M. Pringle Award for Excellence in Research. Craig teaches in both undergraduate and graduate nursing programs.

Dr. Ford-Gilboe has been faculty member in School of Nursing since 1988. Over this time, her teaching contributions have been in the areas of family nursing (undergraduate program) and knowledge development and critical/feminist theory and research (graduate program).She obtained a BscN degree from the University of Windsor (1984), MscN degree from the University of Toronto (1987) and PhD from Wayne State University, Detroit, Michigan (1994). Her research program, focussed of understanding health promotion processes of single-parent families, is a key aspect of the Family Health Promotion Research Program in the School of Nursing. Since 1996, her work has been supported by a fellowship provided by the MRC/NHRDP Joint Program for the Development of Research in Nursing and operating grants from several agencies (eg. MRC, NHRDP, Canadian Nurses Foundation). Her research is feminist in its orientation and much of this work is grounded in the perspective of the Developmental Health Model, an empowerment-oriented family nursing theory that is a theoretical extension of the McGill Model of Nursing.

Dr. Joel Katz is a professor of psychology and Tier 1 Canada Research Chair in health psychology at York University in Toronto. He is the research director of the pain research unit in the Department of Anesthesia and pain management at the Toronto General Hospital in addition to serving as a professor in the Department of Anesthesia at the University of Toronto. Dr. Katz received his Ph.D. in clinical psychology from McGill University. He has held fellowship, scholarship, and scientist awards from the Canadian Institutes of Health Research (CIHR) and has been funded as a principal investigator by the U.S. National Institutes of Health and CIHR. He is a former psychologist-in-chief of the University Health Network in Toronto. Dr. Katz is a member of the board of directors of the Canadian Pain Coalition (CPC) and serves as the chair of the CPC Research Committee. He is on the editorial board of the Journal of Pain and Pain Research and Management. Dr. Katz’s has published more than 220 articles and book chapters and has been invited to present his work at professional and scientific meetings in North America, Europe and Asia.

Dr. Moosa-Mitha is an Associate Professor at the School of Social Work, University of Victoria, BC. Her research interests include Citizenship Studies, Community Engaged Research Methodologies, Transnational Feminist Theory and Refugee/Newcomer Studies. She has published widely in all of the above areas of research. Having completed a research project on Pain and Marginalized Communities (SSHRC and CHIR Funded) as part of a research team, she is presently engaged in undertaking research on three projects: The Role of Private Sponsors of Refugees/Newcomers within a Canadian (Neo)Liberal State (SSHRC funded), Community-Based Participatory Action Research for School-Based Trauma Interventions to support Refugee/Newcomer Youth living in Victoria (SSHRC funded) and Decolonial Analysis of Trauma with refugee newcomer populations: a literature review (RCYO funded).

Eric is a full professor in the Sociology Department at York University. He has been involved in the HIV response for over two decades as an activist, researcher and, in the early years of the epidemic, as a community worker. Eric’s research focuses on the role that various forms of expertise play in governing contemporary health care problems. A recurring focus of his work is the biomedical and broader institutional and discursive response to the HIV epidemic in Canada.

Eric was the recipient of the Dean’s Award for Outstanding Research in the Faculty of Arts, York University, for 2006–2007. In 2014, he received the Dorothy E. Smith Scholar-Activist Award conferred by the Society for the Study of Social Problems. In 2015, he received the inaugural Liberal Arts and Professional Studies Award for Distinction in Social Justice Research from York University. In 2017, he received the CAHR-CANFAR Excellence in Research Award for the Social Sciences.

Eric is a Senior Editor of the Canadian Journal of Public Health and a member of the International Advisory Board of Critical Public Health. From 2011–2015, he served as board member of the HIV & AIDS Legal Clinic (Ontario). He has served as a steering committee member of AIDS ACTION NOW! since 2008 and was a founding member of the Ontario Working Group on Criminal Law and HIV Exposure, an organization in which he continues to play an active role. Over the past 10 years he has published widely on the topic of HIV criminalization in Canada.

Kathleen (Kate) Rice holds the SSHRC-funded Tier II Canada Research Chair in the Medical Anthropology of Primary Care. She earned her doctorate in Anthropology at the University of Toronto (2015), and prior to her appointment at McGill she was a CIHR-funded Postdoctoral Fellow at the Dalla Lana School of Public Health and Department of Family and Community Medicine at the University of Toronto. She has previously held appointments at the Ki Ka Shing Knowledge Institute at St Michael’s Hospital (Toronto), the Centre for Health Services Sciences at Sunnybrook Hospital (Toronto), and in the Social Aspects of HIV Unit of the Human Sciences Research Council (Cape Town, South Africa).

Kathleen’s theoretical and methodological expertise are in the areas of social theories of power and inequity, and ethnography. Her research aims to expose the underlying discourses, ideologies, and categories that shape healthcare, as well as the relations of power that underpin them. Driven by a commitment to high-quality, equitable care for all, her research program aims to improve the health of marginalized populations in particular, especially those grappling with social and economic change. Her specific areas of topical focus include rural and remote health, gender, generation, human rights, HIV/AIDS, chronic pain, pregnancy and birth, and medical education. Her areas of geographic focus are Southern Africa, and urban and rural Canada.

Abhimanyu Sud is a physician and health services researcher based in Toronto, Ontario. He is an Assistant Professor at the Temerty Faculty of Medicine at the University of Toronto and Research Chair, Primary Care & Population Health Systems at Humber River Hospital. His clinical, research, education, and advocacy work focus on the complex intersections of chronic pain, mental illness, and opioid use.

Dr. Helene Berman is a professor at the Arthur Labatt family School of Nursing and the Associate Dean of Research in the Faculty of Health Sciences. Dr. Berman conducts community-based research focused on the subtle and explicit forms of violence experienced by women and children, social and structural inequalities, and health. She is Past President of the Nursing Network on Violence against Women International and lead editor of the ground-breaking report, In the Best Interests of the Girl Child, that has informed the development of numerous programs and policies in Canada.

Dr. Berman’s research has been funded by the Canadian Institutes for Health Research, the Social Sciences and Humanities Research Council, and Status of Women Canada. Her current research incorporates arts-based approaches in a Youth-Centered Participatory Action Research methodology to examine structural violence in the lives of young people in Canada. Dr. Berman was a leading force in the establishment of the Centre for Research on Health Equity and Social Inclusion and serves as its founding Academic Director.

Antoine Boivin, MD PhD is a practicing family physician and the Chairholder of the Canada Research Chair in Partnership with Patients and Communities. Working as a family physician in the community of Center-South Montreal, he completed his MSc and PhD in health services research in the United Kingdom and Netherlands. His research program for the past 15 years has focused on patient and citizen engagement in community care, health services delivery, science and policy. Co-founder and scientific director of the Center of excellence for partnership with patients and the public, he is also co-director of the Quebec SPOR Unit for Learning Health Systems, where he leads national initiatives on patient and public engagement evaluation. In 2020, he was awarded the Donald I. Rice award for vision and leadership by the Canadian College of Family Physicians.

A faculty member of McMaster University since 1988, Dr. Norm Buckley has served three term as Chair of the Department of Anesthesia, Michael G. DeGroote School of Medicine. Having held hospital administrative positions as Operating Room Director, Chief of Anesthesia (Chedoke McMaster) and Deputy Chief (Hamilton Health Sciences Corporation), Dr. Buckley’s particular interests are pain, both acute and chronic. His clinical work is focused on chronic pain management at the Michael G. DeGroote Pain Clinic, McMaster University Medical Centre. In 2010, Dr. Buckley established and is the past director of the Michael G. DeGroote National Pain Centre. He is scientific director of the Michael G. DeGroote Institute for Pain Research and Care. In addition to Dr. Buckley is the nominated principal applicant and Scientific Director of the SPOR-funded Chronic Pain Network. With $25 million in funding, the focus of the Network is improved health outcomes for Canadians living with chronic pain.

Leigh Chapman is a Registered Nurse with a PhD from the University of Toronto’s Lawrence S. Bloomberg Faculty of Nursing. For her doctoral thesis, Leigh explored competency assessment processes and practices of clinicians in an academic hospital. Leigh previously held positions in clinical practice, academia, research, regulation, professional practice and administration. Leigh is an advocate for issues related to social justice, harm reduction and critical drug policy. She is one of the co-founders and volunteer coordinators of the Toronto Overdose Prevention Society and unsanctioned overdose prevention site which operated in Moss Park from August 2017 through July 2018. Leigh is also a Registered Nurse at the Regent Park Community Health Centre’s Consumption and Treatment Service; Secretary of the Harm Reduction Nurses Association and is a Senior Advisor to the Social Medicine program at the University Health Network.

Manon Choiniere is a professor of anesthesiology at the University of Montreal and a Senior Clinician-Scientist Scholar of the Fonds de la recherche en sante du Quebec. She is regarded by the pain research community as the world's expert in the field of burn pain, as a result of which she was invited to write the chapter on burn pain in the Textbook of Pain (Wall & Melzack 1989, 1994), in the Handbook of Pain . A Clinical Companion to Textbook of Pain (Melzack & Wall, 2003), and in Pain - Clinical Update (2001). Research Interests Dr Choinierees research has documented the characteristics and treatment of pain in hospitalized and non-hospitalized burn patients. Her studies have stressed the importance of reassessing the current analgesic practices in order to provide burn patients with adequate pain control, especially in those who are treated on an outpatient basis. Furthermore, she was the first to demonstrate that a large proportion of burn patients continue to feel pain and paresthesic sensations in their healed wounds even years after the injury took place. Dr Choiniere is also actively involved in several studies on the assessment and management of postoperative pain. For example, she has shown that patient-controlled analgesia (PCA) is more costly and does not offer clinical advantages for pain management after hysterectomy compared with regularly administered injections of opioids. These results have created a lot of interest and some controversy as PCA is used in many health care facilities. As a result of her findings, Dr Choiniere has been invited to give several international conferences on the issue of post-operative management. Dr Choiniere is currently involved in several studies aimed at assessing and improving the quality of analgesic practices in various hospital settings.

Directrice de la maîtrise et du doctorat recherche en sciences de la santé, Anaïs Lacasse est professeure à l'UQAT depuis 2009. Elle dirige le Laboratoire de recherche en épidémiologie de la douleur chronique, financé par la Fondation de l'UQAT en partenariat avec la Pharmacie Jean-Coutu de Rouyn-Noranda et Glencore - Fonderie Horne. La professeure Lacasse collabore activement à deux réseaux de recherche provinciaux du FRQS, soit le Réseau québécois de recherche sur la douleur (RQRD) et Réseau québécois de recherche sur les médicaments (RQRM).

Dr. Andrew Pinto is a family physician, director of the Upstream Lab at MAP, and CIHR Applied Public Health Chair in Upstream Prevention in Primary Healthcare.

He is the founder and director of the Upstream Lab at MAP, a space to co-design and rigorously evaluate interventions that tackle the complex social factors that impact our health. Interventions are focused at multiple levels, including individual patients and families, health organizations, neighbourhoods and at the policy process.

Dr. Pinto is a scientist with MAP Centre for Urban Health Solutions in the Li Ka Shing Knowledge Institute, and a St. Michael’s Hospital staff physician. He is an assistant professor in the University of Toronto’s Department of Family and Community Medicine in the Faculty of Medicine, as well as the Dalla Lana School of Public Health and the Institute for Health Policy, Management and Evaluation. He serves as the Associate Director for Clinical Research of the University of Toronto Practice-Based Research Network (UTOPIAN). He was a Commonwealth Scholar, and a winner of an Early Research Award from the Ontario Government as well as a Clinician-Scientist Award from the University of Toronto. In 2019, he was awarded the PSI Graham Farquharson Knowledge Translation Fellowship.

Dr. Anna Zajacova is an associate professor of sociology at the University of Western Ontario. Drawing on interdisciplinary sociology, demography, and social epidemiology scholarship, Zajacova studies population health over the adult life course. In particular, she examines social causes and consequences of chronic pain; she also explores how differentiation in higher education is reflected in health disparities among adults in the United States and Canada. Her work, funded by the National Institutes of Health and the Canadian Social Sciences and Humanities Research Council, has appeared in outlets such as Demography, Journal of Health and Social Behavior, and The Journal of Pain.

Bhavnita Mistry is the research manager for the PEPR project. She has over 14 years of experience managing large and small research studies at the University of Toronto, Holland Bloorview Kids Rehabilitation Hospital and the Toronto Rehabilitation Institute. Her work critically explored the experiences of young disabled persons (children, youth and young adults) and how this affects their health, wellbeing and participation using various qualitative methods. She is also the research manager for the Critical Disability and Rehabilitation Studies (CDARS) lab in the Bloorview Research Institute at Holland Bloorview and Research Coordinator at the University of Toronto. She received her Masters in Geography (Health Geography) from the University of Ottawa.

Yasser is a social justice, equality, equity, diversity, and inclusion practitioner who supports Pain BC’s work in the Partnership for the Engagement of Patients in Pain Research (PEPR) project. A graduate of Brandeis University with a master’s in Conflict Resolution and Coexistence, Yasser has 15+ years in the humanitarian field and non-profit sector in Sudan and Tanzania. He brings his knowledge of community engagement to developing responsive systems for people living with chronic pain.

Jaklyn Andrews is the Knowledge Mobilization Coordinator for the PEPR project. She has ten years of experience in qualitative research, evaluation and knowledge translation. She is passionate about participant engagement, co-creation of knowledge products, and research accessibility. Jaklyn received her MA in Health Promotion from Dalhousie University and completed the Specialist Knowledge Translation Training with the SickKids Learning Institute.

Nathaniel  joined the PEPR team as a research assistant in September 2023. He received his Bachelor of Arts (Honours) degree in Sociology in 2022 and spent a year working with marginalized communities in northern Israel. Nathaniel is most interested in qualitative research and brings his academic and community-service knowledge to all aspects of his work at PEPR. In his free time Nathaniel loves cooking, photography, and exploring the world.

Leigha received her PhD in Sociology from York University. Her research focuses on chronic pain, drug use, and the impacts of policies and programs intended to mitigate opioid-related harms on people with chronic pain and their access to opioids for pain management. She is a Research Associate at Western University supporting research and knowledge mobilization on the use of digital technologies for public health surveillance.

Laura Connoy received her PhD in Sociology from the University of Waterloo. Her research interests center on critical health and migration studies, with specific attention paid to gender, trauma, and chronic pain. She is currently a Postdoctoral Associate for the COPE II Study and PEPR Partnership, both located at Western University. In this role, Dr. Connoy participates in research that focuses on the social factors that shape experiences of chronic pain among systemically and structurally marginalized populations in Canada.

Graham is a critical sociologist trained in qualitative research methodology. He joined the PEPR team as a post-doctoral fellow in late 2023 shortly after earning his PhD from UBC Medicine's Rehabilitation Sciences program. His dissertation explored the socio-political implications of patient engagement in research as a mode of civic action. He holds an MA in political economy (2014) and a BA in political science (2011).