Patient Community Advisory Committees
Connecting the research and patient communities
At OBI, we foster collaborations that centre the patient voice. Our goal is to ensure that patient communities are real partners in efforts to improve experiences and outcomes of living with brain conditions. This means supporting meaningful patient-program partnerships to guide research priorities, activities and more.
What are Patient Community Advisory Committees (PCACs)?
PCAC members are patients, families, community members, and groups with a strong history of patient collaboration. These committees offer invaluable expertise and knowledge based on lived experiences of living with a brain condition and/or navigating care journeys
By bridging the gap between research and lived experiences, our PCACs play a pivotal role in shaping the direction of our programs. They foster meaningful connections between research outcomes and patient well-being.
All Integrated Discovery Programs have a partner PCAC and rely on patient and family members to guide all aspects of research, knowledge sharing, data analysis, and commercialization. This involvement ensures our research stays closely aligned with the needs of our communities. Continue reading below for examples of what these partnerships look like.
CAN-BIND (The Canadian Biomarker Integration Network in Depression)
CAN-BIND is a national program dedicated to research and learning in the field of depression. Their mission is to discover personalized treatment approaches that enable individuals with depression to recover swiftly and maintain their well-being.
Community Advisory Committee (CAC)
CAN-BIND’s CAC is comprised of members with lived experience of mood disorders, caregivers, or individuals connected to advocacy groups for mood disorders. The CAN-BIND project has a demonstrated history of working with their CAC to shape research questions, support outreach efforts, and translate evidence to clinical care. For example, the CAN-BIND Knowledge Translation team has been working closely with CAC members to develop a knowledge sharing platform. Through collaborative efforts with our CAC, CAN-BIND aims to create more effective and patient-centered approaches to depression research and care.
POND Network (Province of Ontario Neurodevelopmental Disorders Network)
POND Network is committed to understanding the neurobiology of neurodevelopmental conditions through research and clinical trials. The program also aims to translate these insights into treatments. Their focus includes neurodevelopmental disorders such as attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), intellectual disability (ID), obsessive-compulsive disorder (OCD), Tourette syndrome, and Rett syndrome.
Participant Advisory Committee (PAC)
POND's Participant Advisory Committee includes patients and families with firsthand experience of neurodevelopmental disorders. They have worked with the research and knowledge sharing team on many activities since the program started over 10 years ago. For example, patients and families have advised on communicating research findings and activities to neurodivergent individuals and their families. The POND team has also consulted with their PAC to determine research priorities over the years.
CP-NET (The Childhood Cerebral Palsy Integrated Neuroscience Discovery Network)
CP-NET brings together researchers, clinicians, and partners in Ontario to improve the lives of people with or at risk of cerebral palsy (CP) and their families. They do this by sharing research and fast-tracking neuroscience discoveries. This collaboration involves top CP experts, patient advocates, and industry partners across the province.
CP-NET Stakeholder Advisory Group
The CP-NET Stakeholder Advisory Group includes people living with CP, families, community members, and groups such as CanChild Centre for Childhood Disability Research. Group members share research priorities, meet with researchers, review grants, and serve as 'Knowledge Users' in grant applications. They also co-organize the CP-NET Family Forum to engage the community and showcase research outcomes.
TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments)
The TRANSCENDENT Concussion Research Program brings together leading concussion researchers, healthcare professionals and community partners (including individuals with lived experience) to explore key questions related to concussion. TRANSCENDENT aims to help improve concussion diagnosis and care for all Canadians.
Community Advisory Committee (CAC)
TRANSCENDENT's CAC is made up of individuals with lived experience with concussion and those within their support networks. CAC members support a range of activities to move the research program forward, including but not limited to research activities (for example, reviewing grants), community outreach activities (for example, advising on community events) and knowledge translation activities (for example, reviewing research outputs). The CAC involvement ensures that the TRANSCENDENT program addresses the right research questions and shares information in a meaningful and relevant way with those who need it.
CALM is currently forming its advisory groups.