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Listening to patients

Organizations looking to improve their products or services recognize the value of asking customers for feedback to understand the current experience and improve upon it. Cancer Care Nova Scotia is no exception. Reaching out to patients, to ask about their experiences and suggestions for improvement has been the way Cancer Care Nova Scotia has conducted business from the beginning. The Cancer Patient Family Network (CPFN) was established in 2001 as the key method to connect with patients to ask for their help in improving the cancer system.

Members contribute to program and policy development, participating in focus groups and committees, responding to surveys and reviewing and commenting on patient education materials. Now, after a decade in operation, current members of the Cancer Patient Family Network were asked to evaluate the Cancer Patient Family Network through a survey and focus groups.

JDemmingsThe survey collected data on member demographics (age, sex, community where members live), how members were recruited, reasons for joining, participation of current members in Network-related opportunities, member satisfaction and recommendations for improving the CPFN. Two focus groups (one in Antigonish and the other in Halifax) were also held to explore these areas in greater depth.

Jillian Demmons, CCNS Patient Engagement Project Coordinator

The average age of the 208 CPFN members who completed the survey was 67 years. They were primarily female, English speaking and white. Over half of respondents had a college or university education and nearly two-thirds were retired.  Sixty per cent of respondents were Network members for two years or less.

Both survey respondents and focus group participants indicated the main reason for joining the CPFN was for information about: advances in cancer treatments, new developments in cancer care, availability of services, research and events and issues within the cancer community.

In the survey, 60 per cent of participants indicated a low level of involvement as a member. Similarly, when asked if they used the CPFN to provide feedback about cancer care in NS, 51 per cent responded that they rarely did so.

The activities of those who did participate included: reviewing and commenting on patient education material, roundtable discussions/one time meeting or event, committee member, focus groups, interviews, surveys, Cancer Answers Public Lecture or a Celebrate Life event.

Although the majority of members indicated a low level of involvement in the Network, 86 per cent said they would recommend the network to others.

In terms of barriers to participation, some respondents and focus group participants believed their opinion is not valued by cancer care administrators or health professionals. Others talked about issues related to transportation, caregiver responsibilities, financial limitations, and lack of computer/internet access.

When asked how to improve the CPFN, they suggested that clarifying the role of the CPFN and what being a member means as a first step toward program improvement. Other suggestions included having more opportunities for interaction, and more follow-up communication to share the outcome of various activities and projects.

Based on membership feedback, the project team is responding to member feedback in a number of ways. The first step is revising the registration form to more clearly reflect the purpose of the Network, and collect more detailed membership data such as why individuals are joining to ensure new members receive the information and supports they need.  Recruitment strategies will be expanded to include social media and member educational videos. The project team will also build on existing relationships with diverse communities such as African Canadian communities and will provide opportunities for health professionals and administrators to discuss the value of and ways to include the patient voice in enhancing the cancer system.

This work is already underway. We’ll keep you posted as we move forward. If you have questions or would like to join the CPFN, please email us at or call us at 1-866-599-2267.