Websites tap into real patients’ expertise to help others coping with diagnosis

For months, Jennifer Smith wondered what was causing neck and back pain so severe that a spa visit, chiropractics and muscle relaxants were rendered useless.
Doctors confirmed a diagnosis of leukemia in 2003. But the Toronto woman had other pressing questions that medical professionals couldn’t answer: how should she tell her kids, then five and seven, that she was sick? What would she say to her friends? What did other cancer patients have to say about chemotherapy?

“I really benefited from talking to people who’ve been going through treatment and really understanding what it was like and what they went through,” says Smith, 43, who underwent chemotherapy and a bone marrow transplant and is now in remission.
Now Smith is sharing her own experience with acute myelogenous leukemia, a cancer of the bone marrow and blood, with countless Canadians through videos on Cancer View Canada’s website.
The site is an initiative of the Canadian Partnership Against Cancer, an independent organization funded by the federal government.
Websites such as Cancer View Canada’s are tapping into the expertise of real patients who can address the psychosocial impact of a diagnosis that doctors can’t necessarily provide.
“Right now we give people pamphlets; they’re generic, they’re not emotional, they often don’t answer the question that they have,” says Dr. Michael Evans, a long-time family physician in Toronto and producer of Cancer View Canada’s video series, dubbed “The Truth of It.”
The unscripted, documentary-style videos feature real patients and cancer survivors, including Dr. Marla Shapiro, a well-known physician and health contributor for various media outlets.
Some of the participants have succumbed to the disease since filming their videos — a fact that’s mentioned in their biographies.
“That’s part of the cancer story for some,” says Evans.
Viewers can watch entire videos or click on segments for specific topics, which range from how to cope with chemotherapy-related hair loss to deciding whether or not to keep working during treatment.
Evans says the candid videos give patients who might feel isolated in their ordeal a chance to hear from others who have gone through the same experience.
They can also help break the silence of hush-hush illnesses, says Catherine Mulvale, executive director of the Canadian Digestive Health Foundation.
She says many people are too embarrassed to chat to their doctor about problems below the belt.
“Two-thirds of the population have some sort of digestive disorder, but you don’t hear people saying, ’I’ve got bad diarrhea, I’ve got blood in the toilet, I’ve been burping really smelly gas.”’
The foundation launched print stories and videos featuring patients and medical professionals on its website last November in hopes of giving people the confidence to talk openly about their symptoms and realize discomfort and pain shouldn’t be shrugged off.
In one video, an athletic-looking man diagnosed with ulcerative colitis — an inflammatory disease of the colon — describes how he thought he was the only person living with the illness.
“I had no one to share my experience with that could explain to me what I (would) have to go through and that was probably the most frustrating part,” he says in the video.
Mulvale says getting the conversation going is vital to spreading awareness.
“Twenty years ago, we didn’t talk about breast cancer; that was a female body part, it was private, it was intimate, you just didn’t do it,” she says. “And now everybody, including teenage boys, are proud to wear pink (breast cancer awareness) T-shirts.”
Smith, whose spot for Cancer View Canada was filmed at her home, says she likes that the videos are honest, but not too clinical or “airy-fairy support group.”
She believes the videos will inspire patients to make real connections with others.
“I think once that someone has seen the videos, if they have further questions, they would be less inhibited about just asking people that they run into,” says Smith.
Evans says the online videos can be especially effective for patients trying to make sense of a new diagnosis in an age when a growing number of people are turning to “Dr. Google” for medical advice.
“With this project, (we) realized the power of the expert patient,” he says.
“The peer-to-peer stuff gets into the nooks and crannies of it all.”