After undergoing successful heart surgery when she was 12, Grace Fisher took part in a learning session with a nurse as part of a research program to help her better understand her chronic condition and how to advocate for her own health.
"For years and years, I had my cardiologist come and talk to me about the results of my heart condition, but never the heart condition itself," said Fisher. "It was nice to sit with the nurse and hear why they were doing the tests, learn about my condition and see a diagram of what I have."
The session made Fisher, who is one of more than a million Canadian children living with a chronic condition, more comfortable speaking openly about her health.
"It gave me confidence in knowing that this is something I can take seriously and not have to tiptoe around. Because I now have all this information, I have the right tools to stand up for myself," said Fisher.
It's exactly the outcome that Andrew Mackie, an associate professor of pediatric cardiology at the University of Alberta, a cardiologist at the Stollery Children's Hospital and a member of the Women and Children's Health Research Institute (WCHRI), had hoped for.
Mackie, whose work is focused on helping adolescents living with lifelong health conditions successfully transition from family-centred care to adult health care, led the program that helped Fisher.
Today, Mackie was named one of seven distinguished researchers as part of a new program to pursue initiatives to improve pediatric health in Alberta and around the world.
The Distinguished Researchers child health research program will be run at WCHRI thanks to a $5-million investment from its primary funder, the Stollery Children's Hospital Foundation, with support from the University of Alberta and Alberta Health Services' Stollery Children's Hospital.
The seven scientists, who have been named distinguished researchers within the Stollery Science Lab, will also act as ambassadors of children's health research in the community.
"The Distinguished Researchers program is about inspiring people to see what's possible," said Mike House, president and CEO of the Stollery Children's Hospital Foundation. "We're really lucky to have in Edmonton some of the best researchers for pediatric care anywhere, and this team is elevating that care right in our own backyard and across the globe. What excites us is the knowledge that we can transform children's health together."
Through research, the funding will help address difficulties facing children and youth as they work through health challenges.
According to Mackie, many adolescents struggle with the transition and some develop serious yet preventable complications as a result. With the new funding, he aims to find solutions that help more young people.
"As pediatric providers, we haven't really done our job if our patients don't know anything about their condition and can't make informed decisions," said Mackie.
With the funding, he aims to expand the reach of his work to include children with developmental delays, Indigenous and immigrant youth, and adolescents with multiple chronic conditions.
"It's an exciting day when you get to launch a new program that supports researchers taking that next big step in children's health research," said Sandra Davidge, executive director of WCHRI. "This is all thanks to the generous donors to the Stollery Children's Hospital Foundation, who understand the importance of research and its ongoing impact on children's health in Alberta and across the globe."
"Thanks to the generosity of the Stollery Children's Hospital Foundation and their donors and their commitment to research, physicians and staff at the Stollery Children's Hospital will continue to offer the best evidence-based treatment and care for their patients and families," said Verna Yiu, president and CEO of Alberta Health Services.
The 2018 Stollery Science Lab Distinguished Researchers
- Todd Alexander is working to better understand and develop personalized drug therapies for children with rare kidney diseases.
- Lisa Hartling and Shannon Scott are building decision-making tools that equip families with enough information to make the best decisions possible for their children and their families.
- Michael Hawkes is developing solar-powered oxygen delivery systems to improve outcomes for childhood infections around the world-especially in high-burden, low-income settings like Africa.
- Andrew Mackie is helping kids with complex needs transition to adult care-improving patient safety, survival and outcomes.
- Kate Storey is leading a peer-led mentorship program that will empower Indigenous teens and improve their health and wellness.
- Lonnie Zwaigenbaum is developing early intervention strategies to screen infants for autism. This will lead to targeted therapies for children who have autism.