Living with cancer: A report on the patient experience

Read about cancer care from the patient perspective, and learn about what patients and their families experience as patients live with and beyond cancer

Living with Cancer: A Report on the Patient Experience is the first in a series looking at Canadian cancer care exclusively from the patient perspective, illustrating the experience of those individuals and families living with and beyond cancer. This groundbreaking report includes data drawn from multiple sources, including Patient Reported Outcomes partners, the Ambulatory Oncology Patient Satisfaction Survey and initial results from the first Canada-wide study of cancer survivors on the experience of 13 000 Canadians with cancer (Experiences of Cancer Patients in Transition Study).

The report calls for the following system-level changes to support person-centred cancer care:

  • Clinicians should have access to real-time data that informs their clinical decisions, to help 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 national 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 database of information on patient-reported outcome and experience measures to facilitate system performance monitoring, quality improvement and research.

Pan-Canadian qualitative and quantitative data
Living with Cancer: A Report on the Patient Experience presents pan-Canadian qualitative and quantitative data on person-centred care collected from thousands of patient’s accounts, including data on wait times and patient-reported outcomes and examples of initiatives implemented in certain jurisdictions to improve the patient experience that could be more broadly adopted.

Downloadable content