Lived Experience Sessions Recap

The sessions were held in May-June 2022

The CBRS is building a collective national strategy to inspire and guide the Canadian government to invest in a major brain research initiative. As CBRS engages various groups of experts to inform the strategy, incorporating the voices of people who live with or have experienced a brain condition and those who support them is of particular importance.  

CBRS held a series of Lived Experience Sessions in May-June 2022 with people with lived experience (PWLE) to discuss emerging themes for how to improve brain research in Canada and to gain their input on the development of the national strategy.  

CBRS received an overwhelming 161 applications from across Canada after just 2.5 weeks. Forty participants aged 16 to 84 years were selected to reflect a balance of diversity across neurological, mental health, and brain injury, geography (rural and urban centers), gender, race, Indigenous identity, socioeconomic status, education level, and familiarity with research. 

Introductory Workshop 

The CBRS held an Introductory Workshop for PWLE on May 17th, 2022 to help participants learn more about CBRS and the work done to date. Participants shared how they imagine brain research could be transformed to benefit the neurological and mental health of all Canadians 

The following major takeaways came out of the Introductory Workshop:  

  • PWLE understand the critical importance of research and how it impacts care and treatment down the road. 
  • PWLE are interested to learn about all types of research and how it works. They are excited to be involved and to partner in the research process.
  • PWLE have ideas about the future of brain research and how to overcome challenges to get there.
  • PWLE identified the CBRS’ six Strategic Focus Areas as embodying at least one dimension of importance and value as classified using the descriptive words relevant, revolutionary, urgent, progressive, achievable, and efficient. 

PWLE Engagement Workshop for Researchers 

More than 25 researchers who had previously participated in a series of Researcher Roundtable consultations on each CBRS Strategic Focus Area took part in a workshop to learn about engaging PWLE in research in preparation for the focus groups.  

Participants shared how they imagine brain research could be transformed by engaging with people with lived experience and the types of knowledge and expertise that PWLE can lend to the national strategy. 

Focus Groups 

Following the individual Workshops, the CBRS hosted a series of 6 focus groups on each CBRS Strategic Focus Area in June 2022 for both lived experience participants and researchers. Feedback from the respective Researcher Roundtable was used to frame the discussion. 

Focus group participants were asked to share their feedback on the importance of their designated Strategic Focus Area and to discuss its potential to impact brain research and the lives of PWLE.