PRIORITY SETTING PARTNERSHIP
About the Project
What are we about?
We aim to shape the future of research in concussion by bringing patients, caregivers, and healthcare professionals together to identify and prioritize the top 10 unanswered questions about concussion.
Who are we?
We are a team of patients, caregivers, and healthcare providers who are working together to identify research priorities in concussion. We want thoughts and ideas from people affected by concussion across Canada with different experiences and backgrounds.
What is a PSP?
PSP stands for Priority Setting Partnership and is a project that aims to identify the top 10 questions that patients, caregivers and clinicians have about concussion in order to guide research funding.
Selecting the Top 10
Survey #1 - Gathering Unanswered Questions
In Spring 2021, we circulated the first survey where we asked participants to send in questions about concussion that they want researchers to answer. In this phase of our project, 249 Canadians submitted 1,761 questions about the diagnosis, treatment, management, prognosis, and prevention of concussion. We read through all the responses, summarized them into questions and removed those that have already been answered by research. This resulted in 59 questions about concussion that we now want to prioritize.
Survey #2 and Final Workshop - Prioritizing the Research Questions
During the second phase of the project, 989 Canadians with concussions, their families, caregivers, and healthcare professionals completed a second survey that helped create a shortlist of 17 questions that they felt were the highest priority to be answered by research. This critical phase of the project gave those people with personal or professional experience with concussions the opportunity to have their say in setting the future direction of concussion research. A final priority setting workshop brought 24 Canadian concussion patients, caregivers, and clinicians from across the country together to exchange views and determined the final top 10 unanswered research questions.
The Top 10 Questions
Meet the Team
Katherine Cowan is a Senior Adviser to the James Lind Alliance (JLA) and is co-chair of the Concussion Priority Setting Partnership (PSP) Steering Group. She has been a key contributor to the development of the JLA method since 2008 and has facilitated over 40 PSPs internationally. Katherine is based in the UK.
Dr. Martin Osmond is a Pediatric Emergency Physician at the Children's Hospital of Eastern Ontario (CHEO), a Senior Scientist at the CHEO Research Institute and a Professor of Pediatrics at the University of Ottawa. His research interest is the initial evaluation and treatment of pediatric head injury, including the acute management of childhood concussion.
Liz Legace joined CHEO-RI in August of 2020 as a Research Coordinator. She has an MSc. in Human Kinetics from uOttawa and an Honours Bachelor of Kinesiology degree from Lakehead University. She holds her Certified Clinical Research Professional (CCRP) certification and has previous experience working with concussed youth from her time at uOttawa.
Quinn graduated from St.Francis Xavier University for a Bachelor of Science in Nursing in 2021. She is now a Neonatal Intensive Care Unit nurse working in Halifax, Nova Scotia. She has worked with the CHEO RI team on many community-led initiatives and research projects, including performing a scoping review that looked at research priorities being set by children, youth and families within Canada. Her passion includes promoting family-integrated care and working alongside patients and families.
Dr. Noah Silverberg is a board-certified neuropsychologist, with 12 years of clinical experience caring for patients with concussion in civilian, sport, and military settings. He recently transitioned into a full-time academic position in the Department of Psychology at the University of British Columbia. His research program focuses on psychological aspects of concussion, including prognostic factors, behavioural and mental health treatment, and knowledge translation.
Michelle Quinlan has been the Research Family Leader Program Coordinator at the CHEO Research Institute for 3 years. In her role, she works with researchers to understand their patient engagement needs and matches them with Family Leaders with lived experiences. She has a background as a business consultant and in project management. She also has in-depth experience as a parent involved with CHEO, CHEO RI and OCTC.
Dr. Shannon Bauman is the founder of Concussion North a Physician led clinic specializing in sports related concussions. She is an Expert Advisor to Parachute Canada and Ontario Neurotrauma Foundation. She has co-authored the “Canadian Guidelines on Concussion in Sport”, Ontario Neurotrauma Guidelines for Pediatric/Adult with Persistent Symptoms; and Provincial Standards for Concussions. She has a passion for research in Sport related concussions.
Dr. Mark Bayley is a Professor and Rehabilitation researcher at UHN- Toronto Rehabilitation Institute and the University of Toronto in the Division of Physical Medicine and Rehabilitation. He is very interested in improving brain recovery and has led multicenter studies of exercise, technology and medications. Mark also provides clinicians the best evidence to follow by leading guidelines, websites and smartphone apps.
Randene Duncan lives with Post Concussion Syndrome. She has navigated an unexpected journey and carved a new purpose for her life after her injury in November 2014. From 1998-2014 she worked as a Respiratory Therapist for Alberta Health Services. In January 2016, she created and continues to maintain a concussion support network that includes a website and facilitating concussion peer support groups.
Phil is an Athletic Therapist and Associate Professor in the Department of Human Kinetics at the Université du Québec à Trois-Rivières and Scientific Director of the Cortex Clinic. He is a researcher at the Centre de Recherche en Neuropsychologie et Cognition and at the Groupe de Recherche sur les Affections Neuromusculosquelettiques. His research work focuses on residual functional alterations in people who have suffered a concussion as well as on the neuroplasticity of the human brain.
Erin Fox experienced a concussion in 2018, and continues to live with some persistent post-concussive symptoms today. Erin is a Procurement Manager with the Canadian Federal Government, and is the mother of a wonderful young daughter.
Isabelle is a pediatric physiotherapist and researcher at the Montreal Children’s Hospital of the McGill University Health Center. She leads a research program that aims to develop interventions for children with concussions based on targeted evaluations of functioning. She is also interested in how they return to their activities after a concussion. Isabelle is an Associate professor of Physical Therapy at McGill University where she trains the next generation of pediatric physiotherapists.
Kanika Gupta is a multidisciplinary artist and social innovator who uses visual art, writing and storytelling to create dialogue and foster deeper human connections. She is the author and illustrator of several essays and a graphic novel on the topic of concussion. Her artwork has been presented in public spaces, outdoor festivals, museums and galleries across North America. Art entered Kanika’s life following a concussion. Her work can be seen at www.byKanika.com.
Ash is a former concussion patient who lives with daily symptoms. He is a Graduate student, avid golfer, and sledge hockey coach in Calgary, Alberta. His experiences from suffering severe concussions in youth hockey when he was 12 led him to advocate his experiences and research the prevention of concussion to raise awareness for the potential seriousness of the injury.
Rosemary is the Mom of a (now adult) son who suffered multiple concussions as a child and teenager. Her experience in caring for a concussion patient highlighted the many unanswered questions around the diagnosis and treatment of concussion. As a steering committee member, Rosemary is pleased to make a contribution towards the important task of establishing concussion research priorities.
Lyle was a multi-sport participant as a youth athlete. He was a high school teacher and coach in a variety of sports for 22 years before beginning work with Saskatchewan High Schools Athletic Association (SHSAA) in 2008. In 2014 he accepted the position of SHSAA Executive Director. Currently, Lyle serves as President of School Sport Canada (SSC). In the role of SSC President, he was invited to join the F-P/T Working Group on Concussion in Sport in the fall of 2019.
Kinga sustained a concussion as a result of a mountain biking accident. Her path to healing was a challenging one. While she never thought she would ever say that, she has learnt a lot from this traumatic experience on personal, professional and relational levels, and would like to share lessons-learnt from her experience with others, helping them deal with TBI in their lives. Kinga holds a PhD in comparative literature and is currently the Research Advisor for the Faculty of Arts at UCalgary.
If you would like to stay informed or get involved in future projects, please email us, give us a call or follow us on Twitter.