Living with Cancer: A Report on the Patient Experience

Living with Cancer: A Report on the Patient Experience, from the Canadian Partnership Against Cancer (the Partnership), is a groundbreaking report that includes data drawn from multiple sources, reflecting the voices of over 30,000 Canadians, and is the country’s largest accumulation of patient data on the experiences of people living with, and beyond, a cancer diagnosis.

This report, and the series that will follow, is possible through national collaborations, led by the Partnership, to both understand and respond to patient needs and concerns. The Partnership is working in all parts of Canada with our partners to ensure patient real-time feedback is always captured and made available to their treating physicians, to allow for meaningful conversations about needs and challenges for those undergoing cancer.

This report demonstrates more than half of people with cancer have unmet physical, emotional or practical needs during diagnosis, while in treatment and after treatment is completed. As a result of these findings, there are four key changes the Partnership is working with our partners across the Canadian health system to make:

• Clinicians should have access to real-time data that informs their decisions, helping to ensure patients’ physical, emotional and practical needs are being met from cancer suspicion through to survivorship.
• Health system administrators should adopt existing evidence-based, validated tools to collect data on patient-reported outcome and experience measures from cancer suspicion to survivorship.
• These tools should be adapted by hospitals and other health care facilities to address the local real-time information needs of their clinicians.
• Provincial and territorial governments should work with health data partners (such as the Canadian Institute for Health Information and Canada Health Infoway) to ensure the infrastructure is in place to create and maintain a national information database on patient-reported outcome and experience measures to facilitate system performance monitoring, quality improvement and research.

By implementing these changes:

• People with cancer will have the time and support to communicate their physical, emotional and practical needs, and to be active participants in their care before diagnosis, during treatment and after treatment.
• Clinicians will receive real-time feedback about their patients’ needs, allowing them to have conversations with patients about their care, address their concerns and offer appropriate, person-centred support.
• Health systems and facilities will have a suite of tools and data that help identify unmet needs of patients with cancer and their families. With this information they can efficiently distribute resources to address gaps in cancer care services.
• Health services researchers will be able to conduct studies to identify innovative ways to improve the patient experience of cancer care.

The Partnership will continue to monitor Canada’s progress as we move to better address the needs of cancer patients.