A significant milestone was met when the “Report 6: The Role and Contribution of Citizen Scientists” was presented to the House of Commons Standing Committee on Science and Research (SCSR) on November 7, 2023. Amidst its five key recommendations to the government, Recommendation 4 shines a spotlight on enhancing civic engagement in evaluating funding applications across three vital granting councils. While the study primarily focused on environmental concerns, a noteworthy segment within the report homed in on health-related matters. One standout highlight was the acknowledgment of the immense potential of citizen science in health advancements.
In this pivotal section, attention was drawn to the groundbreaking work of the Kids Brain Health Network (KBHN). Nicola Lewis, the Chief Executive Officer of KBHN, showcased the Family Engagement in Research (FER) program—an innovative program launched in 2018. Funded, collaborated and codesigned by KBHN and co-led by parents and pediatric researchers at McMaster University’s CanChild Centre for Child Disability Research, the FER program seeks to actively involve parents and caregivers in research.
The FER program is a transformative 10-week online course designed for families, researchers, and trainees. Upon completion, parents gain the opportunity to collaborate with researchers on projects aligned with their interests through a dedicated match-making service. This direct involvement empowers them to shape research from its inception, ensuring it addresses pertinent questions that hold potential solutions impacting families and children.
Lewis emphasized the significance of the presentation to the committee, stating, “The FER program has become a nationally and internationally recognized forum for training and mentorship. The program is creating a rising movement to embed best practices of citizen science into neurodevelopment and child health research institutions and networks across Canada and abroad. But while the program has grown through several partnerships, further investments are needed to sustain commercialization nationally and internationally.”
Lewis continues, “Over the years, we have seen the positive contributions that equitable and inclusive training has had on research for kids with neurodevelopmental disabilities and their families. Kids Brain Health is proud to fund programs like FER that allow families and caregivers with real-life experiences to provide researchers with context they would otherwise not have.” The program’s global outreach has already trained more than 300 individuals from 14 countries, fostering a worldwide community dedicated to driving impactful research.
This report’s acknowledgment of citizen science’s potential, especially in health research, signals a promising step toward more inclusive and impactful policies. The fusion of civic engagement and research not only amplifies voices but also nurtures collaborative efforts vital for tackling critical health challenges
Based on the SRSR committee’s recommendations, the government now has 120 days to respond to this report. The full report is available here, offering a comprehensive insight into the committee’s findings and recommendations.
