Pediatric heart disease patients can face many obstacles throughout their journey, from diagnosis to care management. As they get older, a planned and purposeful transition to adult care helps prevent young patients from falling through the cracks of the healthcare system – and ensures they feel supported and empowered as agents in their own care.
TRANSFORM HF member Dr. Sahr Wali and youth patient champion, Amelia Mahlenbrei Watford, want to make this care transition as seamless as possible. Working in collaboration with partners from SickKids and University Health Network, they are developing two mobile tools – Medly Peds and Chameleon – for pediatric patients and their families, supporting heart disease management and adjustment to adult care.
Dr. Sahr Wali (L) and Amelia Mahlenbrei Watford (R)
Dr. Wali and Amelia have been awarded a Pride in Patient Engagement in Research (PiPER) program grant to advance this work, with a focus on Chameleon – the team’s mobile phone-based educational care companion that offers personalized health and medication tracking, regular health check-ins, and lifestyle reminders. By leveraging technology that resonates with adolescents, Chameleon seeks to promote independence, improve adherence, and support a smoother, more successful transition into adult care.
Features found within the Chameleon app
Centering Youth Perspectives
Amelia joined the SickKids-UHN team as a patient champion in March 2025, building on her previous involvement as an active youth participant in various co-design workshops. Since onboarding, she has participated in design sessions, validation testing, manuscript drafting – and even led a poster presentation at the International Conference on Aging, Innovation & Rehabilitation. With a personal connection to pediatric heart disease, she brings invaluable insight to the project and a deep passion for improving the lives of children facing heart conditions.
The PiPER grant will support Amelia’s continued engagement in the co-creation of Chameleon, including fair compensation for her time and expertise as well as active involvement in future knowledge translation activities.
Amelia presenting at the 2025 International Conference on Aging, Innovation & Rehabilitation
“As a SickKids cardiology patient transitioning to adult care, these projects are super important to me,” shares Amelia. “I’m learning about procedures and other aspects of my heart history through the Chameleon app that I may not have known about because I was so young when they happened. Transitioning into adult care can be intimidating, but having these resources to guide me through and help me to better understand my heart journey is very valuable.”
Looking Forward
The perspectives of people with lived experience continue to be driving forces of this work, ensuring that the voices of patients, families, and caregivers are heard and digital care solutions are created with their needs at the forefront. The ultimate goal is to create a unified program using both Chameleon and Medly as integrated digital health tools, enabling SickKids and UHN teams to provide seamless care and health education throughout a patient’s life course.
“We’re excited to continue this work, building on the insights and progress we’ve achieved so far,” shares Dr. Wali. “This journey is far from over and we look forward to advancing our research towards patient centered solutions that will transform pediatric heart disease.”
The SickKids-UHN team includes collaborators from the Centre for Digital Therapeutics, Ted Rogers Centre for Heart Research, and TRANSFORM HF. Through this work, the team honours Emmet Foster, the bundle of joy who combined his love for singing and the ukelele to bring a smile to every room. Emmet was diagnosed with dilated cardiomyopathy and spent months in and out of SickKids. Six years ago, he had passed in his sleep from a suspected fatal arrhythmia. With the support of their family, friends, associates, and the Bay Street Children’s Foundation, his parents, Jeff and Helen raise funds and awareness for heart failure – building a legacy at SickKids for Emmet. Learn more about Emmet’s story and the Foster family’s fundraising efforts here.
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