Isolation and lack of support are common challenges for many patients with colorectal cancer. But a new website aims to help patients overcome these challenges. Things That Matter: Stories of Living with Colorectal Cancer, is a supportive, online environment where these patients can hear the voices of others who are coping with this illness. The website will be launched later this month by The Canadian Cancer Society, Ontario Division and University Health Network’s Centre for Global eHealth Innovation and can be accessed at www.storiesthatmatter.com.
“Many patients are looking for a network of fellow patients with whom they can share their experience to better understand and cope with the disease. They want to know if others are feeling the same things they are,” says Dr. Nancy Davis Halifax, a researcher at the Centre for Global eHealth and Innovation, and creator of the website. Recognizing the lack of available support for these patients, David Halifax decided to use the website to share the fictional stories of three patients dealing with colorectal cancer and the effects of medical treatment from the disease. For example, one patient story featured on the website describes how one woman longed to join a support group for colorectal cancer survivors but the only way for her to get there was to take the bus, a trip which her age prohibited.
“There is a great deal of excellent medical research on colorectal cancer treatment,” she says “but there is little on what happens to people once treatment for cancer is complete: How do patients live with surviving? That was one of the questions I wanted to explore.” The form of the story was chosen for several reasons Davis Halifax explains: “Stories are part of our daily life; the making and telling of stories is an ordinary activity that crosses cultures and generations. They provide a perspective into particular and shared aspects of illnesses.”
Although the stories are fictional, they are based on a research study in which participants from Sunnybrook and Women’s College Health Sciences Centre’s Gastrointestinal Cancer Clinic talked about their experiences over a period of months. Drawing on significant themes, the website presents each story through text, photo-diaries and audio voice-overs. The result is a rich, in-depth account of the changes one can experience as a result of this illness.
The website was designed with accessibility in mind. The information on the site can be downloaded in pdf format so it can be printed and read. It can also be viewed with or without flash media applications and read with software for the visually impaired. The site was first tested for effectiveness and usability with the featured patients. Davis Halifax says the group was very happy with the result, feeling the site captured what they wanted to share about their experiences.
Davis Halifax hopes Things That Matter will open a whole new area of patient care. She believes the site should be used as a teaching-tool to help physicians better understand the experiences of their patients since it represents what colorectal cancer is like from the patient’s perspective.
Colleagues and researchers have given the site rave reviews, and for Davis Halifax, knowing that participants and patients have embraced the site is the greatest reward for her research.
“I am very proud of this project,” says Davis Halifax. “The experience itself has been humbling; I have been deeply touched by the generosity of the participants who gave hours of their time in not only relating the stories of living with colorectal cancer, but also in writing and photographing their experiences. Each one acted as a teacher and it is my hope that their wisdom and humour, the grace with which they have handled their living and lives comes through.”
Davis Halifax currently resides in Toronto, where she teaches at the University of Toronto at Mississauga as well as York University, and is seeking funding to expand the website to include interactive features and CD-ROM materials in hopes of eventually creating an on-line support community for cancer survivors.