New tool improves health management for childhood cancer survivors

For over two decades, the Pediatric Oncology Group of Ontario, POGO, has been at the forefront of using data to manage the care of survivors. Continuing the trend, POGO now is implementing Passport for Care in Ontario in collaboration with ACCESS and other national partners. It’s transitioning from a paper-based, manually updated system to a web-based tool with real-time linkage to provincial and national registries with personal health information (PHI).

In doing this, POGO is empowering childhood cancer survivors with secure, personalized, user-friendly access to their treatment summaries, for life.

The problem – Survivorship in the shadows: Two of every three childhood cancer survivors in Ontario face the startling reality of experiencing serious late effects from their treatment, including heart disease and secondary cancers.

Some also face cognitive challenges and fertility issues. Yet, many lack access to personalized care plans that could help detect and manage these risks early.

With over 20,000 childhood cancer survivors in Ontario alone and more than 5,000 actively followed in POGO AfterCare Clinics (province-wide health monitoring and screening clinics), the need for timely, individualized health information is urgent.

The current survivor care software, in place since 2015, is outdated and inconsistent across regions, leaving survivors, especially those in marginalized communities, without the guidance they need to thrive. POGO’s plan will revolutionize how survivors and clinicians access their health information and manage late effects.

Dr. Paul Nathan is an important partner on the POGO Passport for Care implementation team. He is head of the Solid Tumour Section and director of the POGO AfterCare Program in the Division of Hematology/Oncology at The Hospital for Sick Children.

“Passport for Care will provide all survivors, regardless of where they live or receive medical care, with an invaluable tool that consolidates their treatment exposures, long-term risks, and recommended surveillance in one easy-to-access place,” said Dr. Nathan. “It will empower survivors to communicate effectively with their healthcare providers and to obtain the tests and follow-up care they need to optimize their long-term health and quality of life.”

The solution – Linking Passport for Care to real-time data: Developed by Baylor College of Medicine and Texas Children’s Cancer Center, Passport for Care is a clinical decision support tool that generates personalized, evidence-informed Survivorship Care Plans based on the Children’s Oncology Group (COG) Guidelines.

In regions across North America where Passport for Care has been implemented, it’s already made a significant impact with over 29,409 survivors accessing their care plans online. Despite this implementation, reliance on manual data entry remains a significant challenge.

The partnership between POGO and ACCESS, a national research network, is groundbreaking. Launched in 2025, the Ontario pilot aims to link Passport for Care with POGO’s childhood cancer registry (POGONIS) and the national Cancer in Young People in Canada (CYP-C) registry to automate care plan generation.

This will reduce clinician workload and ensure survivors receive real-time recommendations to manage their health. Unmatched in the world, POGONIS contains nearly 40 years of population-based standardized and comprehensive data on demographic, diagnosis, treatment and outcomes of children with cancer in Ontario.

The pilot is more than a provincial initiative. While two children’s hospitals in Canada have adopted Passport for Care with manual data entry, the Ontario provincial linkage to cancer registry data will lay the ground for all provinces to streamline their survivorship care and close longstanding gaps.

Equity at the heart of Passport for Care: POGO’s leadership is evident in every phase of the Passport for Care rollout – from securing funding and developing privacy-compliant data-sharing protocols, to piloting the system in select clinics and planning province-wide expansion. The initiative aligns with Ontario’s Childhood Cancer Care Plan: A Roadmap for Ontario 2024-2029, which prioritizes optimizing survivor well-being through improved access to treatment histories and continuity of care.

Looking ahead: POGO is proud to bring Passport for Care to Ontario, where it will ultimately be integrated into the seven POGO AfterCare Clinics, and to help facilitate adoption Canada-wide. By working closely with ACCESS and our clinical partners, POGO is empowering childhood cancer survivors to have the information and tools they need to make informed decisions about their health.

As the Ontario pilot moves forward, stakeholders are focused on sustainability, evaluation, and scale-up. With support from the Ontario Ministry of Health, ACCESS, and survivor communities, Passport for Care is poised to become a cornerstone of survivorship care in Canada.

For survivors, it means no longer navigating the future alone. For clinicians, it means better tools and less manual work. And for Canada, it means a bold step toward equitable, modern, and compassionate care for every child who has faced cancer.

Lauren Ettin is CEO, Pediatric Oncology Group of Ontario (POGO).