Webinar – The Basics of Patient/Youth/Caregiver Engagement in Clinical Trials





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Webinar – The Basics of Patient/Youth/Caregiver Engagement in Clinical Trials

Meet the speakers!

Jenna Kedy
Jenna Kedy, a resilient 19-year-old hailing from Halifax, Nova Scotia, epitomizes strength and advocacy in the face of adversity. Battling juvenile arthritis and juvenile fibromyalgia from a young age, Jenna emerged as a relentless fighter, surviving septic shock and becoming a beacon of hope for others struggling with chronic illness. With a passion for chronic illness advocacy, Jenna has dedicated five years to patient partnership, serving as a mentor with Impact Trials and contributing to various initiatives at the IWK Health Centre, including the Youth Advisory Council and Emergency Department Family Council. Alongside her studies in Family Studies at Mount St Vincent University, Jenna embodies leadership, serving as an ambassador for Trufaces and volunteering with organizations such as the Arthritis Society and Girl Guides of Canada. Through her Instagram blog, “spoonie_jennak,” Jenna raises awareness for chronic illnesses, while her role as Royal International Miss Halifax 2024 allows her to amplify her message on a national stage. With an unwavering commitment to advocacy, Jenna is poised to make a lasting impact on healthcare and disability awareness, inspiring others to embrace resilience and self-care.

Yan Défossés
I’m a fervent promoter of engagement and inclusion. Also adept at new technologies, ask me how the metaverse can promote the development of diverse and authentic partnerships, and I will invite you to join a dynamic virtual community of practice. I like to add color to discussions with my French Canadian accent and my candid reflections. Before becoming the primary caregiver for my son Liam, who lives with spinal muscular atrophy (SMA type 1), I worked in the media industry where I ran a creative agency. With other great parents, I co-founded the Quebec chapter of Cure SMA. I never miss an opportunity to be involved and collaborate to improve patient voice.  Over the past decade, my family has witnessed the evolution of medical care. We closely followed the initial clinical trials, their approval, and the intricate negotiations that led to the reimbursement of the first treatments. Today, our community has three reimbursed treatments available. The neonatal screening, enables all Canadian children to receive treatment before the onset of symptoms. These achievements are the result of intense collaboration among all stakeholders. Nevertheless, access to products and services that meet Liam’s health, education, and cultural needs remains a challenging journey. These obstacles are often encountered by individuals living with complex medical conditions. Consequently, I continue to advocate within institutions and organizations at various levels of jurisdiction for better support and partnership between all stakeholders.

Dawn Richards
Dawn Richards, PhD, lives with rheumatoid arthritis and osteoarthritis. At Five02 Labs Inc., her work combines her analytical chemistry training and her passion to ensure patients inform research and healthcare. She helps people and organizations design and execute their patient engagement initiatives using leading practices and tailoring their approaches to meet their goals and patient partners’ needs. She has contributed to the literature and practice in patient engagement on compensation, authorship, recognizing patients as people with skills and who lead fulfilling lives, and training on patient engagement in research. Dawn is the volunteer Vice President of the Canadian Arthritis Patient Alliance.

Maureen Smith
My commitment and passion for patient engagement and patient partnered research stems from a diagnosis with a rare disease during childhood and frequent flyer status with the healthcare system. I have benefitted both from participating in pediatric and adult clinical trials and collaborating with trialists as a patient partner. I’m especially interested in advancing youth and family engagement in areas of research where it is in its early stages, such as reporting guidelines. I’m proud to say that I’ve collaborated with research teams and patient groups to advise on co-developing 6 pediatric core outcome sets. In June 2023 I was appointed Adjunct Professor at the University of Toronto Dalla Lana School of Public Health, a recognition of the expertise I have acquired in patient engagement as a person with lived experience.  I may pop up on Zoom calls in unexpected places as my husband and I explore Canada in our trailer!

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