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Cathie Watson

Funding to further patient engagement

Cancer Care Nova Scotia is a leader in patient engagement, and now that leadership is being nationally recognized with a $100,000 research grant – the maximum amount awarded – from the Canadian Health Services Research Foundation (CHSRF).

“For CCNS, patient engagement has always been central to the work we do,” says Chief Operating Officer Theresa Marie Underhill. “We use input from patients to improve our programs, our processes, and our policies.”

That inclusive approach is also central to the Patient Engagement Project (PEP) being funded by CHSRF and it’s one of the reasons Cathie Watson, Chair of the Advisory Group leading the work of the project, was interested in being involved.

“I have always been impressed with CCNS’s philosophy of patient and family engagement,” says Cathie Watson, Levels of Care Coordinator with the Atlantic Provinces Pediatric Hematology Oncology Network. “CCNS has not only talked about patient engagement it has been their way of doing business; with District Cancer Committees, the Patient Family Network, Provincial round tables, and focus groups as examples.

“ I am very pleased that they are taking this strategy to the next level. This project will evaluate the effectiveness of CCNS' s patient and family engagement initiatives, and will be working toward improvements; I am happy to be a part of it.”

The advisory group, whose members include patients, will help guide the initiative and provide important insight and feedback. Jim Mulcahy is a member of that team.

“My role is to provide a perspective that is not medical but is a reflection of what patients experience,” he says. “At CCNS, our opinions and suggestions are respected – and acted on. It all goes back to the basic model of care: a patient-centered model.”

Jim Mulcahy

The Patient Engagement Project will assess initiatives currently in place at CCNS and explore how the active involvement of patients influences programs and processes. The focus will be on the Cancer Patient Family Network, which currently has over 800 members including patients, survivors, and family members. The Network fosters member participation in developments related to cancer care. As a result, a number of initiatives have been introduced into the cancer system in Nova Scotia including establishment of the Sunshine Room, the launch of the Cancer Answers Public Lecture Series, and the development of an Action Plan for Cancer Survivorship.





Jim Mulcahy


“The first phase of the study will evaluate the Network to understand how effective it has been as a vehicle to include the patient voice,” says Theresa Marie. “We will also look at those who chose not to become involved to understand why that is.”

The second part of the study will focus on designing programs and approaches to improve the ways that we involve patients and families in cancer system decisionmaking to ensure their participation is meaningful and satisfying and that their input is incorporated into the ways we deliver care. Although the focus of this project is on Nova Scotia, the application of the research goes well beyond our boundaries, says Theresa Marie. “We’re building a body of knowledge that will help everyone in this ‘business’ provide the best possible care for patients and families.”

Indeed, says Jim, the project could have significant implications. “This is part of an awakening. It is a move away from an old model of care to a partnership model of care.”

For the Antigonish resident, involvement with Cancer Care Nova Scotia came in the wake of his second cancer diagnosis, approximately five years ago. “When I was first diagnosed, I found the experience extremely shattering. As a consequence, all I wanted to do was get out of the hospital and leave cancer behind.

“But when my lymphoma returned,” he says, “I started to look for ways to become involved. I was interested in exploring how I could contribute to the patient experience.”

Such contributions are invaluable to CCNS and the health system, says Theresa Marie. “We use this input in so many ways. We need to ensure patients are a meaningful partner in our work.”

Most of CCNS’s Advisory Board are patients, survivors, and families. That said, CCNS recognizes that engagement is about much more than how many are involved. It’s about acting on what is learned.

At CCNS, that action has resulted in the establishment of Cancer Patient Navigators who act as an advocate, an educator, and a supporter of patients and families to help ease the journey throughout the cancer experience. They link patients with networks of professionals and volunteer helpers to enhance their well-being and coping skills and help them improve their quality of life while living with cancer. The Canadian Medical Association Journal recently noted that the concept has spread across the country with “Nova Scotia leading the way.”

That leadership will continue with the Patient Engagement Project. “It is our hope,” says Theresa Marie, “that this research will enable us to improve our own programs and processes – and to help others more fully engage patients and their families.”

The Patient Engagement Project, funded by CHSRF, has a number of co-sponsors providing in-kind support, including: Cancer Care Nova Scotia, Prostate Cancer Canada, the Cape Breton Cancer Centre, the Capital Health Cancer Care Program and Breast Cancer Action Nova Scotia.


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