Claire Snyman is an author, blogger, TEDx speaker and advocate for patient and health care collaboration. She is passionate about inspiring people to put their health in their own hands as a result of her own lived experience as an individual with a brain tumour and other chronic health conditions. Her goal is to increase communication and collaboration between patients, families, caregivers and the health care system and embed an understanding of what matters most to people across health care.
She was also one of our featured Health Talks speakers at Quality Forum 2025, when she spoke of how asking “What Matters to You?” was intertwined with her hopes for health care.
Claire is working with the Rural Coordination Centre of BC (RCCbc) on its Personal Health Record (PHR) project – a journey that began when she expressed what mattered most in her own health care. Read her story below and learn how considering this simple but powerful question can lead to inspiring great change across the health care system.
Claire’s Story: The Red Binder
In 2010, at 34, I was diagnosed with a non-malignant brain tumour after a sudden onset of vertigo and migraines. Nothing prepares you for that moment. Thrust into a fragmented and siloed health care system, I faced specialists, appointments and medications — without access to the very information I needed to make sense of it all.

What mattered to me then — and now — is having access to my own health information. Without access to my electronic health record, I collected every scan, medical report and test result in a red binder. That binder became my lifeline and my single source of truth. It helped me manage my care and exposed a troubling reality: My “patient story” wasn’t connected across my care team. This lack of information flow formed the base of medical negligence when my tumour doubled in size two years later.
Fast-forward to 2025. I now live with multiple chronic conditions and a brain injury from my tumour and surgery. I shoulder the burden of organizing and managing my health information. I see five specialists, my family doctor monthly, and manage a complex treatment plan. Like many Canadians, I have limited online access to my records. Only 39% of us can access our digital health records. This gap not only undermines patient agency and shared decision-making – it is a patient safety issue. Having access would allow me to be part of my care team every day – to be informed, engaged and at the centre of my own health journey.
Initiatives like the Personal Health Record (PHR), developed through the Rural Coordination Centre of BC (RCCbc) with input from patients like me as well as providers and system leaders, is designed to give patients timely, up-to-date and meaningful access to their own clinical information. A PHR is designed to do what my red binder once tried to: bring everything together, but this time digitally, securely and in real time. It’s more than a digital tool; it is a foundation for continuity, equity and safety, especially in rural and remote settings where gaps in care are more frequent and consequential. When our full health story is linked, portable and visible, we are not only more engaged in our care, we are safer.
Like many Canadians, I have limited online access to my records. Only 39% of us can access our digital health records. This gap not only undermines patient agency and shared decision-making – it is a patient safety issue.
When we can’t access our records, we can’t catch mistakes, coordinate our care or even fully understand our own health, and providers are left making decisions without a full picture. What matters to me is building a connected, person-centred health care system where comprehensive health data travels with each patient across their care journey. Patients deserve to know their own story – and to carry it with them. What matters to me is making that possible for everyone and that together, we can finally make that vision a reality.
Explore More from this Story
To explore how the “What Matters to You?” movement is being used to support more person- and family-centred care in BC and how HQBC is involved visit our “What Matters to You?” page.
To see how RCCbc’s Personal Health Record project is improving access to health information, especially in rural and remote communities, visit their project page and explore how it’s supporting more connected, person-centred care.