When you read a headline about a promising new clinical trial, do you ask yourself, ‘Does this finding apply to me? To my family? To my community?’
It should, but this isn’t always the case. For clinical research findings to be relevant, those who participate in the study need to reflect the diversity of the people it aims to help. The problem is that underrepresentation in clinical research is endemic. Historically, groups have been excluded or underrepresented by design. Today, this issue still permeates ongoing research studies. This leads to treatments and solutions that don’t always work as intended for the whole population.
Representation in research is about better science and better health outcomes for everyone.
Why does representativeness matter?
What happens if the treatments we trust were tested only on a small slice of the population? If a depression study recruits only downtown professionals, its findings may not apply to a single suburban parent working two jobs. When research includes mostly higher-income, urban, majority groups, the results risk bias, policy blind spots, and widening health inequities. True equity in research requires deliberate attention to how study design, recruitment, and participation affect underserved groups facing barriers like distance from health centres, financial strain, digital and literacy gaps, or systemic mistrust. Without this, studies may draw incorrect conclusions, which limits their real-world utility and may exclude the very people most affected.
How are Canadian policies changing the course?
In Canada, representation in research is now recognized as both a scientific necessity and an ethical responsibility. Health Canada has issued guidance to ensure women of childbearing age and women who are postmenopausal are included in early trials so that sex-specific differences are not overlooked. Canadian funding bodies now require researchers to embed equity, diversity, and inclusion in their work, while Canadian policy standards set clear expectations for fair and diverse participant recruitment. These standards also highlight the need for respectful engagement with Indigenous peoples. Together, these steps reflect a broader shift toward ensuring Canadian health research better represents the people it is meant to serve.
How is OBI embedding inclusion at the core of discovery?
While national policy sets expectations, the Ontario Brain Institute (OBI) is leading the shift in implementing these principles and has built inclusion and representation into the very foundation of its model and its five Integrated Discovery Programs (IDP). Rather than treating diversity as a regulatory checkbox, OBI emphasizes it as a driver of scientific integrity and real-world impact. Meaningful representation goes beyond enrollment numbers; it requires thoughtful trial design, tailored recruitment strategies, standardized data collection, and accountability. Diversity also depends on where and how recruitment happens, which is why OBI programs span multiple hospitals and community clinics across Ontario.
OBI’s approach is grounded in trust, engaging community organizations, healthcare providers, and key allies. Patient Advisory Committees reinforce the inclusion of diverse lived experiences and recognize participants as essential collaborators rather than as passive subjects, helping to share research priorities and study design. Programs are anticipating and removing barriers to study participation, proactively addressing logistical, cultural, and systemic impediments.
What are our 5 programs doing specifically?
CAN-BIND: offer participants monetary compensation, treatments, and clinical care for depression, while creating a nationwide research platform.
CALM: recruits individuals with multiple health conditions, a group usually excluded from clinical research studies.
CP-NET: increases accessibility for families of children with cerebral palsy by providing home-based or remote sessions and mailing necessary materials.
POND: operates Canada’s first extensive clinical trials network for neurodevelopmental disorders, partnering with multiple research sites and community organizations to broaden recruitment.
TRANSCENDENT: expands concussion research beyond athletes and military personnel by recruiting through accessible community clinics.
By using adaptable methodologies, accommodating participant needs where possible, and studying groups that haven’t been included in research before, OBI is working to close the gaps.
OBI and its IDPs continually monitor recruitment to ensure participants reflect Ontario’s diversity. Recent evaluations show progress, though work remains, particularly in terms of socioeconomic diversity. Equity, diversity, inclusion, and patient partnerships remain core criteria, embedded as foundational to discovery.
Who is missing from brain research – and why does it matter?
Too often, brain research does not reflect the full diversity of the people it aims to help. Without representativeness, the evidence these studies generate is limited. Treatments may be less effective for those who were not adequately represented, and inequities in health outcomes can widen. More representative research means stronger science, more effective care, and improved trust.
Science is like a puzzle and without all the pieces the picture will never be complete. OBI’s vision of better brain health for all Ontarians means making sure that all Ontarians are part of the science.
So, what can you do?
- Policymakers: support resources that reduce barriers.
- Researchers: design with inclusivity in mind.
- Clinicians & community groups: help connect diverse participants to research.
- Patients & families: your experience matters—participate in research or join an advisory group. More information about eligibility and recruitment for each of the Integrated Discovery Programs can be found below.
CAN-BIND: https://canbind.ca/
CALM: https://www.calmstudy.ca
CPNET: https://cp-net.org/
POND: https://pond-network.ca/
TRANSCENDENT: https://www.transcendentconcussion.ca/
