Network Effect: Elevating Brain Research Through Greater Collaboration with People with Lived Experience

To understand and treat the brain, Canada must draw on lived experience at every stage of the research process.

Historically, collaboration between people with lived experience (PWLE) of brain conditions and researchers has been inconsistent, limiting the real-world impact of research. Fortunately, this dynamic is changing as researchers and PWLE increasingly come together with a unified vision to address brain conditions. Just as patients often experience multiple overlapping conditions, researchers are uncovering shared underlying mechanisms, such as inflammation, that influence brain disorders as different as dementia and depression. With both sides eager to break down silos, the potential for meaningful collaboration has never been greater.

At Amplify Engagement and the Mood Disorders Society of Canada (MDSC), we have seen the profound benefits of such partnerships. Our organizations have worked closely with PWLE to understand and address urgent issues affecting patients and their carers.

However, our experience has also revealed significant opportunities for expanded collaboration between PWLE and the brain research community nationwide. Greater national coordination and dedicated support for these partnerships could transform how Canada incorporates the diverse perspectives of PWLE into brain research — and the innovations that arise from it.

Partnering genuinely with PWLE

“People with lived experience” includes those directly affected by brain conditions and their support networks. In the brain research community, this includes people affected by a range of conditions, from neurodevelopmental disorders to mental illnesses and substance use disorders to neurodegenerative diseases, family members, friends, and caregivers.

There is widespread agreement that involving PWLE improves research quality, relevance, and impact. Those living with brain conditions bring unique insights into their daily realities and challenges that can inform what research should focus on, how it is conducted, or how research knowledge is used. This collaborative approach is essential for tackling the complexities of brain health.

Effective engagement of PWLE can occur at every research stage, from design to knowledge translation, and there is no one way to approach it. Regardless of the stage and the approach, it is crucial to have clear objectives for the collaboration and to identify decisions that PWLE can influence. Establishing goals and decision points helps avoid tokenistic engagement, ensuring they can contribute genuinely and substantially to research.

Solutions grounded in lived experience

MDSC, as a Lived-Experience-led organization, consistently advocates for the inclusion of PWLE throughout the research process. This approach ensures mental health solutions are aligned with real needs, ultimately improving care for everyone.

A notable example is the MIRA project, an AI-powered chatbot designed to help users navigate the complexities of mental health resources in Canada. MDSC developed MIRA with the University of Alberta and other partners to connect healthcare workers and their families with personalized mental health resources and services. The project brought together experts in computing science, psychiatry, healthcare workers, family members and PWLE. The involvement of PWLE ensured that the chatbot met the real needs of the target audience.

Today, MIRA is available to all Canadians, simplifying access to trusted mental health resources. It illustrates the power of community-academic partnerships to create practical, impactful solutions.

Another example is our educational curriculum for training the next generation of researchers. This initiative, developed with academic partners and guided by an expert panel, trained PWLE to become active members of research teams, empowering them to work effectively with researchers and communicate findings clearly. This approach turns PWLE into key allies in knowledge translation and dissemination, ensuring their insights lead to tangible improvements in mental health care.

At Amplify Engagement, we are deeply committed to fostering meaningful partnerships between PWLE and researchers. In collaboration with the Canadian Brain Research Strategy, we engaged PWLE in developing a national brain research strategy. Our role was facilitating the engagement process and ensuring all voices were heard. We brought together a diverse group of 35 participants representing different provinces, cities, ages, genders, races, Indigenous identities, socioeconomic statuses, educational backgrounds, levels of familiarity with research, and a wide range of brain conditions to participate in a workshop and six focus groups.

PWLE provided invaluable insights that are shaping the future of brain research to improve brain health nationwide. Their contributions reinforced many core elements of the strategy, particularly the importance of investing in transdisciplinary training. Participants identified gaps in knowledge and skills that hinder collaboration between researchers and non-researchers, prompting the strategy to call on the federal government to support a national training platform to equip them with the tools to collaborate effectively. (A summary of CBRS’s Lived Experience Sessions provides more details on what we asked and the feedback received.)

We found that PWLE were enthusiastic and deeply engaged throughout the process. One participant said after a workshop, “The excitement was clearly universal.”

Call to action for policymakers and funders

Canada is at a critical moment in brain research. It has a vast, largely untapped opportunity to partner with PWLE of brain conditions and draw on their perspectives to improve research outcomes.

We urge Members of Parliament, ministers, policymakers and funders to recognize and respect the expertise of PWLE and actively involve them in decision-making processes. Partnering with PWLE will ensure that policies and research initiatives are inclusive and aligned with the real-world needs of patients, caregivers, and families, making everyone feel valued and respected in the research process.

We also recommend substantial federal investment to coordinate and connect PWLE of brain conditions with brain researchers. Specifically, we recommend developing a national network to facilitate meaningful and continuous engagement in brain research. Dedicated funding should be allocated to transdisciplinary training and capacity development so that PWLE can participate in research and scientists can partner effectively with PWLE. With sustained effort and resources, Canada can fully leverage the experiences of PWLE to advance brain research that genuinely reflects Canadians’ diverse values and needs.