The IMPaCT mentorship program is comprised of three types of mentors: youth mentors, parent mentors, and academic mentors. Together, they bring complementary perspectives and expertise that strengthen the design and conduct of clinical trials. 

Youth and parent mentors contribute lived experience related to patient engagement across the clinical trial lifecycle, including: 

• Participating in clinical trials themselves or as their child’s caregiver 

• Navigating perinatal care 

• Supporting children through pediatric medical journeys 

While our youth and parent mentors may not have direct lived experience with a fellow's specific health condition of interest, they all have extensive knowledge in navigating the Canadian healthcare system and partnering with clinical service delivery and health research teams. They also provide expertise in areas central to patient-oriented research such as consent, accessibility and knowledge mobilization. The insights youth and parent mentors offer support fellows as they explore how to meaningfully engage with both research participants and lived experience partners throughout their clinical trial.

Youth and Parent Mentors’ Contributions to Clinical Trial Protocols and Patient Engagement Training 

Youth and parent mentors bring a nuanced understanding of the barriers and enablers that often inhibit or facilitate meaningful and authentic patient and family engagement in research. They offer critical insight into how patient engagement influences: 

• Clinical trial design 

• Recruitment strategies /outreach 

• Participant experiences 

• Retention 

• Dissemination of trial results 

Youth and parent mentors support fellows by: 

1. Guiding the meaningful integration of patient partnerships across all stages of clinical trial development, from proposal drafting to knowledge mobilization plans 

2. Advising on trial feasibility from a participant perspective, including burden of participation, alignment with outcomes that matter to patients and families, and outcome measure instruments.

3. Highlighting commonly overlooked areas in patient and family partnerships, such as: 

• Age-appropriate communication strategies 

• Culturally relevant, sensitive and safe engagement 

• Clear expectations for compensation, communication expectations and time commitments 

• Power imbalances between researchers and patients 

As equal members of the mentorship team, youth and parent mentors meet with fellows and academic mentors to review clinical trial proposals and share insights grounded in lived experience. Mentors also contribute additional expertise drawn from their own skills, work experiences, and studies.

Impact on Fellow Development and Research Practice 

Through their mentorship, fellows gain: 

• A strong appreciation for honouring patient voices in research 

• Practical tools for building respectful and collaborative patient partnerships 

This mentorship encourages fellows to design research that is more applicable to the populations they aim to engage and to disseminate research findings in ways that are relevant and meaningful to the communities they hope to reach. 

After completing the IMPaCT program, fellows are encouraged to continue centring patient engagement as a guiding principle in their future research.

Advancing Equity and Patient-Centred Research 

IMPaCT’s youth and parent mentors play a crucial role in shaping the next generation of clinical trial researchers who are committed to: 

• Health equity 

• Accessibility 

• Understanding the real-world implications of research for children, adolescents, pregnant people, and families 

Youth and parent mentorship ensures that fellows learn to conduct research with patients and families, not just on them. 

By embedding youth and parent perspectives throughout the mentorship experience, the IMPaCT program supports the development of ethical, inclusive, and patient-centred clinical research.