Stories @CSI: Patient Commando is improving healthcare outcomes through patient narratives

gg1.By Lisa Ferguson, CSI Reporter

Actor Daniel Stolfi was undergoing chemotherapy treatment when he started writing a one-man comedy show about cancer. His friends and family thought he was crazy. No one was going to laugh at cancer, they told him.

While there’s nothing funny about cancer, Daniel’s story of his experience with it is. It’s also powerful and moving. By sharing what he went through—losing, at age 25, his hair, appetite, strength, sex drive, even his desire to dance—Daniel is helping healthcare professionals like those who watched him perform recently at Toronto’s Sunnybrook Hospital to view their patient as more than a symptom or a condition. Such understanding can improve doctor-patient relationships and, in turn, patient outcomes.

Performances like Daniel’s are part of the modus operandi of Patient Commando, a patient advocacy group founded in Toronto in 2010 by Executive Director Zal Press, who has his own story of battling illness.

Zal has lived with Crohn’s disease, a chronic inflammatory bowel illness, for over 30 years. For many of those years he was “the typically unengaged patient,” taking pills and doing what the doctor told him to. He was in and out of hospital, tried different types of treatments, and had surgery.

About eight years ago, the death of a 32-year-old nephew from melanoma shook the family up, and for the first time Zal considered the impact of his own illness on the people he loved and how it had limited his life. “I got really angry,” he says, “and got more engaged in my health, became interested in the issue of illness and what it meant.” He also started yearning to do something more than his work as a small manufacturer of mass-market wall decor.

Opportunity presented itself. The Crohn’s and Colitis Foundation of Canada advertised for volunteers for its speakers bureau. Zal responded, figuring that after years in sales and business development he knew how to tell a compelling story about his experience with illness. He told it, discovered the power it had, and started the online platform Patient Commando to empower other patients to share their stories.

Patient Commando uses patient stories—“a disruptive technology,” as Zal calls them—to improve doctor-patient communication for better healthcare outcomes. Research has shown, for example, that patients are 12% more likely to follow a treatment plan when they have been actively involved in determining it. Hearing patients’ experiences can foster empathy and demonstrate to healthcare workers the value of listening to their patients.

That’s what compelled Daniel Stolfi to return to Sunnybrook’s Odette Cancer Centre almost three years to the day after completing a gruelling chemotherapy protocol (once a week for 104 weeks). Watching an abridged version of his award-winning stage show, Cancer Can’t Dance Like This, the audience of residents, nurses, family physicians, palliative care physicians and long-term care physicians learned about Daniel’s physical, mental and emotional experience, and how this shaped who he is spiritually, socially and culturally.

After sharing his personal perspective on cancer, Daniel helped the healthcare professionals understand the reciprocal relationship between storyteller and listener—that is, “the way you listen to your patients is going to affect the way they tell their stories to you.” Feeling listened to, and feeling that they are not only a participant but also a partner in their treatment, makes for a better patient experience and may help the outcome.

The performance was the debut of Patient Commando’s continuing medical education (CME) programming. Their approach—using patients’ own stories to teach healthcare professionals—is unique, and their accreditation by The College of Family Physicians Canada to provide this education is a milestone for the organization.

The CME programming is an addition to Patient Commando’s “medutainment” (medical education using entertainment) arsenal, which includes live stage shows like Cancer Can’t Dance Like This and speaking engagements for professional health conferences. All performances are infused with humour.

Patient Commando’s performances change perceptions, “sometimes in an uncomfortable way, sometimes in an entertaining and humorous way,” Zal explains. Daniel decided that not only was it okay to talk about cancer, it was okay to make people laugh about it too. “The only thing that stands in the way is people’s inhibitions to telling their story and sharing their story,” Zal concludes, “and if I can help break down those inhibitions or find new ways to channel that storytelling, I think it can make a huge difference.”