Patient stories valuable for improving care

Can storytelling help improve the way patients experience care? That was the focus of a recent workshop hosted by the Partnership at the MaRS Centre in Toronto. More than 50 oncologists, oncology nurses, social workers and cancer survivors discussed how stories captured through video can be used as a tool to support professionals in making improvements in care and to support patients throughout their cancer journey.

The workshop was based on The Truth of It: an unscripted video series about cancer, which documents a range of intimate, firsthand and unscripted accounts by over 40 Canadians of their experiences with cancer. The series was created as an educational resource for health care professionals as well as patients, survivors and others with a personal connection to cancer. Some of the cancer survivors interviewed for the series also attended the workshop.

“To frame the interviews in the series, each participant was asked what you would tell your best friend if they came to you to say they had been diagnosed with cancer. The idea behind the series is that while every person’s cancer experience is unique, common themes along the way provide important insights that can help to improve the experience of cancer,” said Anna Greenberg, the Partnership’s Director of Knowledge Management. “The workshop’s concept builds on an emerging body of evidence linking storytelling to health outcomes.”

Partnership Board member Dr. Marla Shapiro chaired a panel of thought leaders at the workshop on how improvements can be made to the patient experience and to deliver patient-centred care. The panel members included:

• Dr. Marla Shapiro (Chair), a family physician, medical contributor for CTV and a participant in the video series.
• Dr. Mike Evans, a family physician and founding director of the Health Design Lab at the Li Ka Shing Knowledge Institute. It was Dr. Evans who originally conceived of the Truth of It video series.
• Doug Gosling, a participant in the video series, a cancer patient, and an active volunteer within the health community.
• Dr. Pamela Catton, a practicing radiation oncologist at the Princess Margaret Hospital in Toronto. Dr. Catton has been involved in health professional education for 25 years as a clinical teacher, course and program developer, educational innovator and administrator. She is also the founding director of the Electronic Living Laboratory for Interdisciplinary Cancer Survivorship Research (ELLICSR).
• Dr. Deborah McLeod, a clinician scientist in nursing with the Capital Health/QEII Cancer Care Program and an assistant professor in the School of Nursing at Dalhousie. Dr. McLeod is a clinical member of the psychosocial oncology team and incoming president of the Canadian Association of Psychosocial Oncology.

The panel shared their impressions of the video series and led an engaging discussion on how cancer centres and health providers can connect cancer patients with stories and practical advice from other patients. Workshop attendees then examined themes including talking to kids, patient involvement in their own care and finding the right support and a new normal.

In addition, Dr. Bill K. Evans, President of the Juravinski Cancer Centre provided summary reflections on the video series and related discussions.

It’s a very vulnerable thing to put yourself on video and have your story widely disseminated. I’m very touched by it. At the medical school level I would see huge power in presenting these videos to sensitize all doctors to this [emotional] dimension of care.” — Dr. Bill Evans, Juravinski Cancer Centre

The Partnership is committed to building on The Truth of It by supporting partners in tailoring the videos for use in different practice settings and contexts. Recently, the North Simcoe Muskoka Regional Cancer Program in Ontario and Princess Margaret Hospital’s ELLICSR Survivorship Program used several clips from the series to frame panel discussions around the patient experience and approaches to make improvements in care across the system in the region. The BC Cancer Agency, Gilda’s Club and the Juravinski Cancer Centre in Hamilton are examples of other organizations who are also integrating the series within their work.

The next phase of the project includes creating new videos to enrich the series with stories from across Canada. Additional workshops will also be planned across Canada.

The Truth of It: an unscripted video series about cancer is a joint initiative of the Partnership and the Health Design Lab of the Li Ka Shing Knowledge Institute.