Claire, a final-year medical student and longtime NYAC member, is a passionate advocate of patient-oriented research (POR), which seeks to meaningfully engage partners with lived and living experience (PWLEs) at every stage of research.
Claire Dawe-McCord, NYAC member
“I think of it like a business model,” she says. “You wouldn't create a product without consulting with consumers. We’ve been making these research products that didn't involve the end users.”
Claire joined the NYAC in 2019 while pursuing a Bachelor of Health Sciences at McMaster University.
“I reached out to Jan Willem Gorter [Co-Principal Investigator of CHILD-BRIGHT's READYorNot™ Brain-Based Disabilities Project], because I really wanted to work with him,” she says. Jan encouraged her to become a youth research partner with READYorNot™. From there, she was recommended for the NYAC.
Since then, Claire has been an active youth research partner on the READYorNOT™ project. She was also a speaker at the 2023 CHILD-BRIGHT Conference and helped shape a study about youth mental health during COVID-19. She even ran her undergraduate thesis project, which explored transitions between pediatric and adult health care, through the network.
Being a youth research partner has cemented her belief that people with lived and living experience should be involved in research from the ground up. “It’s the future of health care,” she says. “Plus, it’s beneficial to individuals living with a disability to see good come out of their own experiences.”
Claire is living with a very rare neuromuscular disorder that affects her brain and muscle functioning. But like many of her NYAC peers, it took years for her to receive a diagnosis. "My symptoms were dismissed,” she says. “I was told that I was just anxious.” When she was 15, she went into multi-organ failure. Finally, doctors began to take her symptoms seriously and provide her with the care she needed. Claire also lives with attention-deficit/hyperactivity disorder and dyscalculia.
When asked how her brain-based disabilities have affected her life, Claire is pensive. “I think I’m a very resilient and adaptable person. Outside of acute flares, I don’t think about my disabilities.” Despite her symptoms, she’s incredibly active. She’s an avid skier and has been looking into adaptive rock climbing. “And I’m a really good cook,” she says with a smile. “I cook a lot for friends!”