Recruitment for CBRS Indigenous Engagement Sessions

Background

Indigenous Initiatives are a critical part of CBRS to ensure that the unique interests and perspectives of the diverse groups of Indigenous Peoples of Canada are acknowledged, upheld, and implemented throughout all aspects of our work as we build a national strategy for brain research. 

Amplifying the unique and diverse voices of Indigenous peoples in Canada will allow for enriched brain research, as these voices have long been silenced via the colonial structures in the country. We strive to acknowledge the past (including historical injustices), recognize the present (appreciate Indigenous strengths in culture and language), and envision the future (healthy reciprocal relationships between Indigenous Peoples and Canada).  

A robust national brain initiative must encompass the vast, distinct, and rich traditional knowledge of Indigenous peoples in Canada, as well as affirm the community expertise and sovereignty of First Nations, Metis, and Inuit people.   

“Indigenous people are not well represented in brain research – brain research is not focused on Indigenous peoples, or researchers have not yet had the conversations about cultural relevance. If we do not find a way to include Indigenous people, the disparities that exist in these research domains, and accessibility to innovations and treatments may only grow”. 

– Dr. Christopher Mushquash, IKHG Member 

Who are we looking for? 

We are looking for researchers in neuroscience and mental health (especially Early Career Researchers and trainees), Traditional Knowledge Holders, and People With Lived Experience (PWLE), to participate in one of a series of 90-min Focus Groups for CBRS Indigenous Initiatives.  

These individuals do not need to be directly involved in brain research but should be able to provide insight and feedback from an Indigenous perspective, regarding our six strategic focus areas: Open Neuroscience, Diversity & Team Science, Neuroethics, Platform Science, Transdisciplinary Training, and Neuroscience-AI Interface. Find out more about our priorities for Indigenous Initiatives here.

If you or you know any individuals, groups, or organizations, who might want to be involved: indigenous@canadianbrain.ca 

 

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. 

Submission to House of Commons Standing Committee on Science & Research

Our brains define who we are, how we behave, what we strive for, and how we interact with each other and our environments. Because our brains are so integral to our capacities to live good lives, brain research has the promise to improve the lives of all Canadians.

We are at a critical inflection point in making progress to understand the human brain. Canada must seize this opportunity to reap the societal and economic benefits and needs to be able to keep up with, connect to, and draw on the efforts of other national and pan-national brain initiatives.   

The House of Commons Standing Committee on Science & Research (SRSR Committee) was created in the fall of 2021 to boost the attention on science from federal parliamentarians and to allow them to hear from Canadians and experts on issues of national concern on science and research. In its first project, the SRSR Committee conducted a study of the “Successes, challenges and opportunities for science in Canada” to develop recommendations as to how to improve the current state of science research nationally. 

The CBRS submitted a brief calling for the establishment of a Brain Research Initiative for Canada. An executive summary of the submitted brief is outlined below:  

Executive Summary

The coalition convened by the CBRS believes that the time for a Canadian Brain Research Initiative is now. We have the network, partnerships, vision, and strategic plan in place. Now we need the funding to catalyze this network into concerted, bold, and concrete action. 

  • Understanding the brain – in health and disease, across the entire lifespan, and in interaction with emerging technologies – will be critical to Canada’s success and well-being in the 21st century.
  • Canada’s neuroscience and mental health researchers are among the most productive and influential in the world, despite operating with more limited funding than many of their global colleagues.
  • The CBRS has united Canada’s brain researchers, in coalition with Indigenous Peoples, private and public science funders, industry leaders, and people with lived experience of brain disease or injury, to develop a clear and compelling vision for how to revolutionize the study of the brain and translate our research into applications that will benefit all Canadians
  • This coalition has collectively envisioned six near-term initiatives that positions Canada as a world leader in brain research that is open, collaborative, transdisciplinary, ethical, inclusive, and critically, successful at the large scale needed to make real progress on one of the most complex systems ever known.
  • Canada’s emerging brain research strategy has also been informed by its leadership in the International Brain Initiative (IBI). Unlike some of its IBI counterparts (the US, EU, and Japan), Canada has never had a national brain research initiative.

You can download the full brief here.

The submitted brief is based on outcomes from “A Canadian BRAIN Initiative?” panel discussion at the Canadian Science Policy Conference in November 2021.

$1.5 million to develop a Canadian brain research strategy

A pan-Canadian team of researchers has secured a $1.5 million grant from the Canadian Institutes of Health Research to develop a strategy to position the advancement of knowledge about the brain as a national research priority and support the creation of the Canadian Brain Research Strategy Network. This network will coordinate Canada’s participation in the International Brain Initiative, which brings together the world’s major brain research projects.

Neurological disorders are the leading cause of disability and the second leading cause of death worldwide. The burden of neurological disorders has substantially increased over the last 25 years with the aging of the Canadian population. The coordinated efforts of brain researchers from across Canada through the Canadian Brain Research Strategy Network offers an unprecedented chance to reduce this burden and to improve the quality of life of Canadians.

The Canadian Brain Research Strategy Network is headed up by Dr. Yves De Koninck, a professor with Université Laval’s Faculty of Medicine and director of the CERVO Brain Research Centre, and Dr. Judy Illes, a professor at the University of British Columbia and director of Neuroethics Canada. The heads of 31 teams from Canada’s leading neuroscience institutes and research centres will join with them in developing the strategy. The coalition Neurological Health Charities Canada will bring the voice of Canadians affected by brain conditions to strategy development.

Several issues convinced the researchers of the urgency of developing a coordinated vision of brain research. “The first was the slow progress in the fight against brain disease,” explains De Koninck. “We’re still not able to cure or effectively treat disorders or illnesses like autism, Alzheimer’s, addiction, or depression. We believe that concerted action by neuroscience researchers will be a game-changer, just like it was for cardiovascular disease, where mortality rates have dropped 75% compared to 60 years ago.”

Another issue was the human and economic cost of brain disease. “In the course of their lives, one Canadian in three will be diagnosed with a brain disease or experience a brain injury. This often has a devastating impact on their quality of life and that of their families,” adds Deanna Groetzinger, manager of Neurological Health Charities Canada (NHCC), a coalition of organizations that represent people with brain diseases, disorders and injuries in Canada. “A 2016 study showed that neurological illnesses and mental health problems generated annual costs to the Canadian economy of some $61 billion.  In addition, the impact of the COVID-19 pandemic on stress and anxiety, particularly among health care workers and people living with brain conditions, shows just how important mental health is to our society.”

The Canadian Brain Research Strategy will coordinate Canada’s involvement in the International Brain Initiative. Like the Human Genome Project, which brought the entire scientific community together between 1988 and 2003 around the sequencing of the human genome, the International Brain Initiative will see thousands of scientists working toward a shared objective: understanding how the brain works and improving the treatments available to those suffering from brain-related illnesses. “Key aspects of the Canadian Brain Research Strategy in this regard are the ethical, legal, societal and cross-cultural importance of discoveries about the brain and their meaningful translation into practice” notes Illes. “The neuroethical piece has already grounded the formulation and execution of the Strategy.”

“Canada’s participation will focus on the brain’s plasticity, which underpins our ability to learn, remember, and adapt,” says De Koninck. “This should give us greater insight into how these processes can be disrupted and lead to brain disorders and pathologies. We also hope our collaborative, concerted approach to research will attract note. We want the Canadian way to set an example for other countries.”