The content of the first Canadian Patient Summit was designed with the advice of patients, families and caregivers through a survey that asked them to identify the issues and topics that they wanted discussed at the first Canadian Patient Summit.

More than 130 patients, family members and caregivers shared their experiences, their stories and their ideas for the future of Canada's health care system on the first day of the Canadian Patient Summit on Sunday, 28 March 2026 in Toronto.

On Monday, 29 March 2010, more than 220 participants joined the conversation. Elected officials, civil servants, academics, researchers, journalists, economists, doctors, nurses, and other professionals joined this unique conversation with patients, families and caregivers. Summit Themes Six broadly shared themes arose from conversations over the two days:

• Advocacy - Patients and caregivers said they feel excluded from the decisions around health policy or service delivery. They believed a strong, united patient and caregiver voice would assist their efforts to be informed, involved and engaged in government decisions that affect them directly.
• Access - Patients in rural, remote and northern communities, and particularly First Nations communities, said they cannot access healthcare services and information without travelling or the use of technology (e.g. tele-health). Access to culturally, linguistically and physically appropriate information and services was also identified as limited by a number of Canadian patients and caregivers.
• Affordability - Patients and caregivers said that affordability related not only to the cost of medications, devices or supplies, but also to all the other things required to live well. For example, regular foot exams or appropriate foot care or shoes were said to be too costly by some patients with diabetes who as a result live at high risk of foot ulcers and potential limb amputation. Other patients and caregivers identified affordable healthy food as a barrier to living well with their medical condition.
• Availability - Some patients and caregivers identified finding specialists or appropriate healthcare professionals, treatment centres or medical services as a challenge. In some parts of Canada, a doctor or nurse shortage reduced availability. In other communities, there simply are no medical specialists (e.g. endocrinologists). Cancer care centres or wound care clinics and the expertise that clusters around these centres of excellence are missing.
• Awareness - Patients and caregivers said they found the healthcare system a challenge to navigate. Frequent changes to programs and services, as well as a lack of awareness of how to access government funded programs or services both in the healthcare system and other departments of government, were identified as significant barriers to living well with their medical condition.
• Information sharing - Patients and caregivers said they found talking with other patients and caregivers they learned that they were not alone in their frustration and also learned tips on how to tackle some of the challenges they face daily.

RECOMMENDATIONS Patients, families and caregivers recommended four priorities:

1. Advocate together by creating a Canadian Patient Coalition.
2. Ask all levels of Canadian government to put patients at the heart of healthcare policy and decision-making.
3. Ask provincial and territorial Ministers of Health to provide navigators to help patients and caregivers support their own efforts to live well with their medical condition within the healthcare system.
4. Support advocacy efforts to ensure every patient in Canada has one medical or health record.

Please click here for complete Summit report.
Final report from the First Canadian Patient Summit, March, 2010 PDF, 426k.