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.
