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Teaming Up for Better Treatment


So she and a band of fellow volunteers got together and wrote a short script for a skit, inspired by Saturday Night Live’s parody of Jeopardy! Their play, Mythbusters: Cancer research in jeopardy, 
introduced myths about clinical trials—like that they’re only a last resort for patients with no other treatment options—and corrected the misinformation using videotaped messages from cancer researchers. At the inaugural performance, at Nashville’s Gilda’s Club location in 2009, Lee transformed into “Alexandra Trebek” and the crowd went wild.

The audience also learned something: In a study presented at the American Association for Cancer Research’s annual meeting in 2010, Kennedy and her colleagues reported that, according to quizzes administered before and after the performance, audience knowledge increased by 20 percent after the show. In addition, more than 40 of the 50 people in attendance said they would discuss clinical trials with their loved ones. 
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​Dana-Farber's Patient and Family Advisory Council played a major role in the design of the Yawkey Center's Thea and James Stoneman Healing Garden, an indoor space that features seasonal flowers, shrubs and plants.
 
After working on the show, Lee’s interest in clinical trials continued. Along with about 20 other volunteers at Vanderbilt, she now frequently advises researchers who are developing trials. She is also pushing for more research, “not just on primary treatment but also on metastatic disease.” Her volunteer work has given her an inside look at the complexity of cancer care and research, yet Lee says she remains hopeful. “I certainly want this disease to be conquered.”

A Building in Boston
More than 1,000 miles away, in Boston, a similar group of survivors is also celebrating success. There, the change wrought by survivors now has a physical presence.
 
Patients and their families banded together to establish Dana-Farber’s advisory council in 1998, out of fear that their voices would be drowned out as the cancer center underwent a major overhaul. Since then, members of the council have been involved—largely as unpaid consultants—in major changes the hospital has undertaken, including the planning and development of the new Yawkey Center for Cancer Care, which opened in January 2011. The 14-story building focuses on patient care, and sky bridges connect it to a research facility across the street. As a result of the involvement of these volunteers, the Yawkey Center—from its floor layouts to the bright and colorful chapel and the parking procedures—bears the imprint of people who know what it’s like to be a cancer patient. 

“[Participating] was the most incredible experience,” says Nusbaum, who sat on a committee that helped design floor plans for the new center. “The architects and the designers and facilities people really listened to what I had to say.”

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​Thanks to patient input, the chemotherapy infusion suites at Dana-Farber's new Yawkey Center have bright windows and chairs with massage and warming features.​
“We were involved in choosing the colors on the walls, the flooring, the way the furniture is placed, the kinds of chairs,” adds Anne Tonachel, who was diagnosed with stage III ovarian cancer in 2005 and joined the advisory council when the Yawkey Center was just a seven-story-deep hole in the ground. “We knew sometimes patients might want to be by themselves, and other times be snuggled up to someone else. That led to the decision to have a combination of single chairs and little sofas.”

An early version of the plans called for exam rooms to be on the outside of the building and the infusion rooms to be interior and windowless. But the former patients said no. “We spend most of our time in infusion or waiting rooms, and we don’t spend that much time in the exam rooms,” says Tonachel, a retired preschool teacher. “We wanted the infusion areas to be flooded with light.” Nusbaum also finally found a way to get her original problem solved. During a meeting that involved advisory council volunteers and the center’s planners, “I said it would be great if everything pertaining to your disease, whether having your vitals taken or seeing your doctor or getting your infusion, were all on the same floor,” she recalls. “That was not their original plan, [but] that's what we have today. We really changed the whole way they thought about the building.”

Getting Involved
Crossing the Quality Chasm, a 2001 Institute of Medicine (IOM) report, stressed the importance of patient-centered care, a model of health care in which institutions consider the experiences of patients, like Nusbaum, Lee and Tonachel. The IOM criticized the American health care system for being “overly devoted to dealing with acute, episodic care needs” instead of focusing on the long-term needs of patients. Patient and family advisory councils can help large medical facilities treat people more like patients, rather than “cases”—or collections of symptoms.

Most major cancer centers have such councils in place. But, says Nusbaum, even if your hospital doesn’t have one, there are still ways to get involved and push for change. 

“Pick one area that you feel passionately about,” she says. “Start small on just one project and pull together a core group of people and try to find a way to work with staff who are receptive to listening to patients and family members.”

Being part of the process can be life-changing, Nusbaum says. “It’s so empowering to know you can really make a difference in the lives of other cancer patients. I've done a lot of things in my life, but [my work on the advisory council] is the most powerful, important work I've ever done. It’s made me an activist.”

Adds Tonachel: “Every week, I come into contact with people who are not going to get better, and that’s sad and hard, but I have confidence that they’re going to be helped to manage whatever comes their way as the disease progresses, and I didn’t know that before. As a society, cancer is probably one of the scariest words we know. But because of my experience ... I’m not afraid of cancer anymore.”

​Stephen Ornes wrote about metastasis research for the Spring 2012 issue of Cancer Today. He lives in Nashville, Tenn.​
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09/27/2012
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