Engaging cancer survivors to improve the journey

The Challenge: Lack of communication impedes a constructive dialogue

The Ontario Cancer Plan, led by Cancer Care Ontario (CCO), is dedicated to improving the experience for patients travelling through the world of prevention, screening, diagnosis, treatment, follow-up and palliative care. However, until recently, there was no mechanism for patients or family members to talk with Cancer Care Ontario and tell the agency what they needed. Easy communication is critical to a continuing dialogue among policy makers, providers and patients and their families.

The Improvement Project: Telling their own stories

Esther Green is the Provincial Head of Nursing and Psychosocial Oncology and the Clinical Lead of Patient Experience at CCO. She and Sara Urowitz, Manager of Educational Informatics at Toronto’s Princess Margaret Hospital/University Health Network, worked with patient advisors to establish the Patient and Family Advisory Council (PFAC) with support from the Canadian Foundation for Healthcare Improvement. As Green says, “The people who have the most expertise to really advise in terms of the patient experience are patients and their families.” PFAC brings together patients and family members from across the province to provide CCO with the details of their unique experience. “You don’t know what it’s like to have cancer until you have cancer,” says a PFAC member.

The Result: Ensuring individuals are empowered to speak out

Naomi Greenberg, Project Coordinator of Patient Experience at CCO, says that CCO was accustomed to looking at care through a clinician’s lens. “Now we see that if we really want to improve the patient experience, we need to look through a lens of patients and really understand what the experience means to them.”

Just as important as establishing PFAC was ensuring it is effective. Green and Urowitz did this by helping council members develop skills for being effective members of the body. As laypeople, PFAC members had not worked with high-level decision-makers and they needed the ability to meet decision-makers on their own ground. “We’re saying, ‘hey, you’re important, we want your voices, we want you to make decisions,” says Urowitz. “And we want these individuals to be empowered to share those thoughts and voices with decision-makers.”

To help equip council members, CCO has developed a tool kit to support work of other organizations wanting to create or redesign an existing council. One point it stresses is how important that first meeting is. People will either engage or turn off, says Green, depending on how clear the messages are and whether participants feel that they are simply there as tokens. As well, she says, prepare for change. “What we did in our first meeting is different than today—and that’s a good thing!”

The Impact: A tool kit that can be used by similar organizations

The toolkit is now available online as a tool for other organizations to adopt and use as they establish patient advisory councils. As PFAC expertise grows, the number of requests for PFAC involvement with other parts of the organization and outside stakeholders has increased; PFAC engagement with other working groups, such as the Cancer Quality Council and the Disease Pathway Management group, have emerged . CCO has continued to support this initiative beyond the two year improvement project through the provision of resources available through the CCO Patient Experience Program, as well as sustained funding in CCO’s base budget. 

The toolkit is available at:  www.cancercare.on.ca/pfactoolkit

Esther Green imageEsther Green
Provincial Head of Nursing and Psychosocial Oncology
Clinical Lead of Patient Experience
Cancer Care Ontario
Toronto, Ontario


To learn more about CFHI's patient and family engagement initiatives, please visit www.cfhi-fcass.ca/WhatWeDo/PatientEngagement or email us at info@cfhi-fcass.ca