Empowering patients and families through accessible pediatric oncology resources

For parents and families facing childhood cancer, the journey is anything but easy – it’s a path filled with many questions, tough decisions, and endless hope. While plenty of information is available on the internet, not all of it is based on research evidence, or comes from trustworthy sources. At a time of uncertainty, accurate and reliable information is the first step towards finding accurate information about treatment and care for a child with cancer.

At ACCESS, we firmly believe that information about research, innovation, and care are important resources to provide to patients and their families during a difficult time. In line with our mission of ensuring equitable access and inclusivity, ACCESS recently funded the site customization of the COG KidsCare app – a vital resource developed by the Children’s Oncology Group (COG) to provide high-quality information for patients and families. This app is a trusted place to find accurate, up-to-date information to make informed decisions with confidence. Building on the work of previous funders and collaborators, the app’s site customization allows tailoring of information specific to each pediatric oncology care at centre across Canada.

The COG KidsCare app addresses a long-standing challenge in pediatric oncology – the overwhelming flood of information at the time of diagnosis. As Dawn Pickering, Co-Lead, Education & Training research theme, and a Person With Lived Experience in pediatric cancer, recalled, “I was handed a big binder, and that itself is a little scary… having to know all this information, and what if I missed the fine print.”

In contrast, the app puts information right where families need it – on their phones. “My phone was my life during my son’s treatment,” said Dawn. “The additional option of an app makes a lot of sense… it would make it so much easier for families to get through the overwhelming amount of information thrown at them during treatment.”

The content within the COG KidsCare app is built on expert consensus for an optimum user experience. More importantly, it is broad enough to remain relevant across different provinces and local hospital sites while offering high-quality resources such as family handbooks, new diagnosis guides, and videos.

Additionally, the focus on local customizations across Canada makes the content even more practical. “Instead of just saying, ‘A fever is dangerous. Go to the hospital,’ it becomes specific to the site, ‘This is the number you call if you’re at SickKids, and this is where you go,'” explained Alia Petropoulos, a clinical educator at SickKids.

Beyond providing information, the app offers functional tools that make daily management easier for families. With features to store and call healthcare team members directly, track appointments, lab results, personal notes, and a calendar to manually record upcoming treatments and appointments – it serves as a one-stop-shop support system.

“ACCESS stepping in to fund the customization of the COG KidsCare app means that smaller sites don’t have to worry about finding the money to customize the app. It also ensures equitable access to information for all families across Canada that is unique to their treating hospital and local communities” noted Sue Zupanec, Nurse Practitioner at SickKids.

This kind of support is critical to ensuring families across Canada have similar tools regardless of where they live. “The customization of the app was a collaborative process, with input from healthcare professionals, educators, and people with lived experience. We had a mom of a childhood cancer survivor, a nurse practitioner, a staff physician, and we consulted other experts to ensure the content reflected diverse perspectives,” said Alia Petropoulos.

By making reliable information more accessible and manageable, the app is more than just a resource – it’s a lifeline for families navigating one of the most challenging experiences of their lives. ACCESS is proud to champion this initiative, reaffirming our commitment to improving access to pediatric cancer research and care resources for all.

Learn more about ACCESS research themes, groups, and projects here.