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Engaging patients to improve the cancer system
Cancer Care Nova Scotia’s Cancer Patient Family Network (CPFN) was established in 2001 as a means of connecting with and learning from patients about ways the cancer system can be enhanced and improved. Membership is free and all who have experienced the cancer system, as a patient, a family member, a caregiver or a friend, are encouraged to join.

“A patient’s experience is very powerful,” said Sarah MacDonald, CCNS’s Patient Engagement Coordinator. “Patients, as well as their family and friends, who have experienced the cancer system have first-hand knowledge of what works well and what needs improvement. We want to learn from the experiences of patients and their loved ones so we can improve all aspects of the cancer system.”

JillianRecently, with funding from the Canadian Foundation for Healthcare Improvement, Cancer Care Nova Scotia surveyed CPFN members to determine how members viewed the Network, their level of participation, and opportunities for improvement. Survey results indicated that many members didn’t understand that the Network’s purpose is to engage patients in cancer system improvement. Also, there was a lack of understanding about what patient engagement is, how CPFN members might contribute, and how their contributions make a difference.

A number of strategies were developed to address the issues identified by Network members. Members were asked to provide suggestions to clarify the purpose of the CPFN; this request resulted in the creation of a new tagline for the CPFN – Partners in Cancer System Improvement. A video is being developed to highlight the role that patient engagement plays in cancer system improvement. In the video CPFN members provide examples of meaningful ways they have shared their expertise to improve the cancer system, such as participating in a focus group to create new patient education materials, working as a committee member to provide advice on clinical standards or a cancer screening program, speaking with the media about an experience to bring a cancer-related story to life, or participating in a research study.

In addition to improving our communication about the purpose of the Network and providing concrete examples of what patient engagement looks like, the timing of membership recruitment will also change. While patients and families are welcome to join the Cancer Patient Family Network at any time, in the past patients were most often recruited as members when they were beginning their cancer journey. Understandably, this is a time when a person’s sole focus needs to be on getting through the treatment and healing. Based on membership feedback, recruitment efforts will now focus on patients who have completed their treatment. Those who join will receive regular updates from the CCNS and support to enable meaningful participation.

“For people who are interested in using their experience to make a difference in the cancer system, there are a variety of opportunities,” said Sarah. “We realize not everyone will want to participate, but for those who do, we want to make it as easy for them and as meaningful as possible."

For more information about the Cancer Patient Family Network or to become a member, visit  or call 1-866-599-2267.