#PartneringForPain #PartenairesPourLaDouleur - Patients, Parents, and Researchers Co-Producing the Future of Pediatric Chronic Pain
Submitted by Dr. Kathryn Birnie, PhD CPsych, Postdoctoral Fellow, University of Toronto & The Hospital for Sick Children
Do you have unanswered questions about treating chronic pain in children and teens?
If you are (or were) a child or teen living with chronic pain, a family member, or a treating healthcare provider, complete this brief 5-minute survey to have your say on the future of pediatric chronic pain research and care in Canada. Your voice matters.
Stories like those of Anaïs Poirier (The Globe and Mail, 2012), Riah Schuh (CBC News Calgary, 2016), and Staci Berman (CBC News Toronto, 2017) give voice to the 1 to 3 million Canadian children and teens living with chronic pain. About 5-8% of these youth are significantly impacted by their pain and struggle with normal everyday activities, like going to school, being active, and having fun with family and friends. Canada has made incredible strides over the past 10 years to notice and address chronic pain in children and teens, doubling the number of dedicated pediatric chronic pain clinics across the country. Currently, there are 10 specialized multidisciplinary pediatric chronic pain clinics and two intensive rehabilitation programs in Canada, mostly located in large urban pediatric health centres. Research to better understand pain in children has mirrored this progress, with exponential growth in peer-reviewed publications since the field first began in the late 1970s and 80s. However, the problem of pain in childhood and adolescence is far from solved – and a new expertise is needed.
So, who is this new expert? It’s one that has been there all along. But historically, we haven’t been listening. As is true across all areas of health research, what and how to study pain in children has generally been decided by researchers. Although one mother’s voice was critical for sounding the alarm on poorly managed pain in children in the mid-1980s, the public voice in pediatric pain research has been limited. This old-school way of doing research has omitted the biggest experts of all - children and teens actually living with chronic pain and their families.
A recent CAPHC blog by Dr. Christine Chambers called for “transformative change in how we think about and approach pain management in children”. A largely overlooked opportunity is the chance to partner with patients and their families on research teams. This is referred to as patient or public engagement and entails “…research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’, or ‘for’ them” as science has traditionally done (INVOLVE, 2018).
Our CIHR-funded project, #PartneringForPain (#PartenairesPourLaDouleur), is part of this transformative change. We are a cross-Canada partnership of young adults living with chronic pain, parents, healthcare providers, researchers, advocacy groups, and policymakers. Our goal is to co-build a sustainable patient engagement strategy to direct the future of pediatric chronic pain research and care in Canada. Right now, we are working to identify the Top 10 uncertainties or unanswered questions about treating chronic pain from the perspective of those who are (or were) children and teens with chronic pain, their families, and treating healthcare providers. We are following an established priority setting process developed by the James Lind Alliance and already applied to over 50 different diseases to identify research priorities that really matter. The first step is a brief 5-minute national survey with patients (kids and teens with chronic pain), their families, and healthcare providers (available in English and French through July 2018!).
Additional goals of our project are to create an online Canadian patient engagement registry that will link youth and families who are interested and able to act as partners in research in pediatric chronic pain with researchers seeking such partnerships. We also recognize that patient and family engagement in research creates a new type of relationship between youth and families, and researchers. To address this, we are working to facilitate pediatric specific patient engagement training for patients, families, care providers, and researchers. It is critical to consider power differentials, systemic barriers, expectations, knowledge, and skills that can make or break how impactful, respectful, and meaningful patient engagement partnerships can be.
Now let’s be clear, patient engagement is not new, and the early adopters are light years ahead. Groups like the Canadian Arthritis Network have been actively partnering with patients in research for 20 years. More recently, patient and family engagement in research is happening in Canada across areas of child health beyond our team’s work. Also in pediatric pain, the ACCH (Aboriginal Children’s Hurt & Healing) Initiative co-led by Sharon Rudderham and Dr. Margot Latimer showcases strong research and community partnerships to bridge the gap in understanding Aboriginal children’s pain and hurt and improve healthcare experience. The #itdoesnthavetohurt and #kidscancerpain campaigns led by Dr. Christine Chambers bring together researchers, parents, and digital media experts to effectively translate evidence-based pediatric pain knowledge to parents. The Hospital for Sick Children has recently launched a Research Family Advisory Committee as part of their Family Advisory Network to integrate patient and family engagement in research institution-wide, and pediatric-specific patient engagement training is soon to be available (see the PORCCH project). There is a growing abundance of resources to support patient and public engagement in research in Canada and around the world. Leading organizations include INVOLVE in the United Kingdom, and more locally the Alberta SPOR SUPPORT Unit and the Centre of Excellence on Partnership with Patients and the Public.
Although Canada is not the first nor the farthest ahead, we are amongst the leaders in patient and public engagement in health research through longstanding advocacy by patient-led groups and, more recently, through promotion by health research funding agencies, such as the Canadian Institutes of Health Research. We are well overdue for embracing this new landscape in child health research. Patients and families are ready for their voices to be heard and valued. It is time to meaningfully listen and co-produce the future of child health research together.
The #PartneringForPain project is co-led by Dr. Katie Birnie and Dr. Jennifer Stinson at The Hospital for Sick Children. Other project team members include Katherine Dib, Mary Anne Dib, Carley Ouellette, Kimberly Nelson, Matthew and Bill Dawson, Dolores Pahtayken, Dr. Melanie Noel, Dr. Krista Baerg, Dr. Jill Chorney, Dr. Paula Forgeron, Dr. Christine Lamontagne, and Dr. Patricia Poulin. Partnering patient advocacy organizations include PainBC and the ILC Foundation, as well as representation from the Ontario Ministry of Health and Long Term Care. Our project is funded by a Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Collaboration Grant, and funds from The Hospital for Sick Children, the Alberta Children’s Hospital Research Institute, the Saskatchewan Health Research Foundation, the Children’s Hospital of Eastern Ontario Research Institute, and the Dalhousie University Faculty of Medicine, with additional in-kind support from the Chronic Pain Network and CAPHC.