PATIENT ENGAGEMENT

At CanStroke Recovery Trials, we believe that the voices of people with lived experience (PWLE) of stroke are central to advancing stroke rehabilitation research.

Our commitment to patient engagement ensures that individuals who have experienced a stroke, along with their families and caregivers, play a key role in shaping the research that affects their lives. 

Definitions (from the Strategy for Patient Oriented Research Patient Engagement Framework)

Patient: An overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends. 

Patient Engagement: Meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities. 

Patient-Oriented Research: Patient-oriented research refers to a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.

Patient Partners and People with Lived Experience in Action: Meaningful Research Collaborations for Maximum Impact

November 27, 2024 Pre-Canadian Stroke Congress Workshop

Hosted in collaboration with the March of Dimes Canada, AbbVie Corporation, and Heart and Stroke Foundation Canada

Why Patient Engagement Matters

Patient engagement helps us:

  • Develop research and rehabilitation strategies that are more relevant and effective,
  • Address barriers to participation, making trials accessible to a diverse range of individuals,
  • Enhance the overall quality and impact of stroke recovery research.

How We Involve PWLE on the Platform:

  • Steering Committees: Patient Partners are members of steering committees to ensure that decisions made on the platform are guided by the perspective of PWLE.
  • Patient Engagement Workshop: CanStroke and StrokeCog developed a patient engagement workshop for PWLE in Calgary and beyond (virtual attendance was available) to promote Patient Partner involvement in research by demystifying clinical research, identifying ways PWLE can be involved on research teams across the research continuum, promote the awareness of PWLE opportunities in research, and create networking opportunities for PWLE with researchers, healthcare professionals and trainees to foster collaborations. 
  • Trial Design: Many trials on our platform ensure that recruitment materials are reviewed by PWLE prior to use, ensuring that their insights promote more accessible, practical, and effective recruitment and consent strategies. 
  • Newsletters: Tools and resources are provided to PWLE through a newsletter which includes promoting upcoming webinars and activities. 

By collaborating closely with patients, CanStroke is building a future where stroke recovery is not only effective but also truly aligned with the experiences and needs of the individuals we serve. Together, we’re advancing stroke rehabilitation for a healthier tomorrow.

To learn more about Patient Engagement opportunities on our platform as they come available, sign up for our newsletter HERE.

Patient Engagement Organizations

National:

Centre of Excellence on Partnership with Patients and Public
Passerelle

 
Provincial:

British Columbia

BC Support Unit/Patient Voices Network
ReachBC

Alberta

Bethecure.ca Alberta
Alberta PaCER (Patient and Community Engagement Research) Patient Internship Program
University of Calgary Clinical Trial Participation
Alberta O’Brien Institute for Public Health 

Saskatchewan

Saskatchewan Centre for Patient Oriented Research

Manitoba

SPOR MB/Centre for Healthcare Innovation Manitoba Clinical Research Portal

Ontario

Ontario SPOR Support Unit
Clinical Trails Ontario
Population Health Research Institute 
University of Ottawa Heart Institute

Quebec

Montreal Health Innovations Coordinating Center
Centre de recherche du CHU de Québec
Institut universitaire de cardiologie et de pneumologie de Québec
Quebec SRAP Support Unit

New Brunswick

Maritime SPOR Support Unit

Newfoundland and Labrador

NL SPOR Support Unit
Quality of Healthcare NL Patient Partners

North West Territories

NWT SPOR Support Unit
NWT SPOR Projects Database

Nova Scotia

Maritime SPOR Support Unit

Prince Edward Island

Maritime SPOR Support Unit

CanStroke Updates

Featured News