• 2008 Fall/Winter Paths of Progress

    Leading the way

    Council members spread the message of patient-centered care
    By Christine Cleary

    Kari DudleyTwo-time cancer survivor Kari Dudley (right) is organizing a speakers' bureau to manage speaking requests for survivors such as Martha Hayward. 

    When breast cancer survivor Martha Hayward gives talks at other organizations about Dana-Farber's patient-centered approach to care, her audience is often surprised when she steps up to the microphone. "They are not used to hearing from an actual patient," explains Hayward. "It's not until I go elsewhere that I realize how unusual our style is here."

    Hayward is a member of the Adult Patient and Family Advisory Council (PFAC) at Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC), which, along with the pediatric PFAC, is at the heart of the Institute's patient-centered philosophy. For the last 10 years, the adult council has addressed the care provided through DF/BWCC, while its pediatric counterpart, founded in 1999, focuses on patients of Dana-Farber/Children's Hospital Cancer Care.

    Together, the councils give patients and families the opportunity to be leaders and educators, spreading the message of patient-and family-centered care locally and internationally, and teaching staff members at all three partner hospitals what it means to be a patient. Advice from these groups is sought on nearly every important matter concerning patients and families, from shortening the time spent waiting to be seen by a clinician to helping plan clinics beyond the Longwood medical area.

    Patients as teachers

    "They teach me what it means to be a cancer patient."
    – Janet Porter, PhD 

    In a traditional picture of health care, clinicians are on one team and patients on the other. The patients are physically and emotionally vulnerable, and doctors, nurses, and other providers have the knowledge and skills to make them better. Dana-Farber works from a different paradigm, in which both sides have wisdom to impart. Patients are considered experts in being patients, and their perspectives make the organization better. "When I describe our Patient and Family Advisory Councils to colleagues outside Dana-Farber," says Janet Porter, PhD, DFCI's chief operating officer, "They ask, 'What do you call the patients and families who do this work?' And I say, 'I call them teachers.' They teach me what it means to be a cancer patient. As leaders, we have to be humble. Who am I to say what a cancer patient needs?"

    Currently, advisory council members serve on more than 80 committees and project planning groups, making "Let's ask the council" a common refrain among staffers planning clinical programs.

    "To call them 'advisors' is not strong enough," points out Carolyn Hayes, PhD, RN, director of the Institute's Shapiro Center for Patients and Families. "They are not on the sidelines offering their opinions. They often work so hard we have to remind ourselves that they are volunteers, not employees.

    "I consider myself to be patient-centered," adds Hayes, "yet the council members always teach me something I didn't know."

    Increasingly, health care leaders beyond Dana-Farber are recognizing the importance of this patient-centered approach. Dana-Farber was recently named the second annual recipient of a Health Care Excellence Award by Blue Cross Blue Shield of Massachusetts, cited as a leader in engaging and empowering patients in every aspect of care.

    "Visitors are astonished that we include patients and families in meetings where we talk about sensitive subjects such as medical errors, and seek their help in enhancing our patient safety programs," Porter says. She often cites her surprise and delight that the search committee for her position as chief operating officer included a patient, who fired tough questions during the interview process.

    "After a recent speech I gave about patient involvement in the design of our new Yawkey Center for Cancer Care," she recalls, "someone asked, 'Isn't it exhausting to ask patients and families every time you do something?' I said, 'No, it's easier, because then you are more likely to get it right.'"

    Ambassadors for care

    Andrew Mackinlay and motherAndrew MacKinlay and his mom, Cyndi, give talks about what it's like to be a childhood cancer survivor. 

    Council members are frequently invited to speak at health care organizations and conferences in New England and beyond about such topics as teen and young adult cancer survivorship, patient safety, and how to create a patient-centered model of care. They teach staff, other patients, and other organizations, and their engagements are so frequent that council member Kari Dudley is formalizing a speakers' bureau to respond to requests, seek new opportunities, and offer training to speakers.

    "We invited two council members to speak to our board of directors, and we were impressed by the fact that patients and families really do work in partnership with hospital leaders in every aspect of care," says Julie Rosen, executive director of the Kenneth B. Schwartz Center, an organization that strengthens the relationship between patients and caregivers, and helps caregivers provide compassionate health care.

    Recently, Martha Hayward traveled to Irkutsk, Russia, with Yelena Wetherill, PhD, a Dana-Farber breast cancer researcher, to help teach women the value of early detection. Pediatric council cochair Eric Rodriguez is a popular speaker within and outside Dana- Farber, notably at the bi-annual Lance Armstrong Foundation summit. Rodriguez had a brain tumor behind his eye at age 15 and a subsequent cancer on his tongue at 26; despite a slight speech impairment, he's an eloquent and tireless advocate for teen and young adult patients and survivors.

    Leukemia survivor Andrew MacKinlay, 15, whose mother Cyndi serves on the pediatric council, is also unafraid of the stage, speaking at various survivorship and fundraising events. "I try and let people know that if I can get through cancer, they can too, and my mom talks about the things a parent can do to help," says Andrew.

    Anne HristovLeukemia patient and PFAC member Anne Hristov reviews Yawkey Center for Cancer Care plans. 

    Many council members find the transformation from private cancer patient to public speaker to be very powerful. "Who knew that I would become an advocate for cancer patients worldwide?" said the late Scott Viera when his term as cochair ended in Jan. 2007. "I have had a chance to address a variety of audiences, from health care leaders to college students."

    PFAC members are also leading the way on the legislative front. Thanks to an idea from adult council member Anne Hristov, patients and families can use a Web site to help influence cancer research and funding legislation.

    In addition, the council draws site visits from hospital representatives around the world, recently as farflung as Iceland, who are looking to study how the perspectives of patients and families are included in patient care planning.

    Personal growth, sense of community

    Giving back. Making a difference. Easing the next family's cancer journey. These reasons are often cited by "PFACers" for joining up. Once on board, they frequently discover another benefit – personal growth.

    Many of the active or emeritus adult council members (30 in total) are cancer survivors, several years past treatment, and feel that taking part helps them heal while they help others. Those who are retired or have a flexible work schedule can attend meetings or work as patient "rounders" in the clinics, gathering feedback from patients about their experience. Some even manage to serve during treatment; Dudley learned she had breast cancer after joining the council as a nine-year survivor of Hodgkin lymphoma, and Viera was receiving care for colon cancer while he was co-chair. "Scott would go straight from his infusion chair to a meeting," recalls Hayes.

    Rider familyCaroline and Mike Rider find time to serve on the pediatric council despite their busy family life. 

    The councils also give members a ready community of support. In a place that emphasizes cure and survival, both groups welcome the participation of families that have experienced bereavement. Former adult council co-chair Jim Stam lost his wife to cancer, and current pediatric co-chair Christine Reilly lost her 5-year-old son. "We see our lives not only in terms of what we lost, but what we were given," reflects Reilly, who published a brochure to guide friends of families whose children are facing the end of life.

    Pediatric council members (eight active and four emeritus) often have to balance raising children, working, and tending to the needs of their young cancer patient or survivor. Some, such as Rodriguez, faced cancer themselves as kids, although most are parents who bring a special kind of fervor to their work.

    "I notice as co-chair of the pediatric council that parents advocating for their children can be more passionate than patients advocating for themselves," explains Rodriguez. "Many parents want to make specific improvements to benefit their own child or other families."

    For many, that is an integral part of why they serve on the council. Mike and Caroline Rider, whose 5-year-old son, Charlie, is a leukemia patient, have two tangible goals. Mike wants to help create a chart for families to track their children's medications, and Caroline is leading the effort to install lockers in the Jimmy Fund Clinic for families to store their possessions. "When you spend the day in the clinic with your sick child and his or her healthy siblings, you have a lot of stuff – coats, snacks, games, homework – especially in winter," Caroline explains. "Right now, we have to drag everything around."

    Even with Charlie in treatment and two older sons at home, the Riders make time for council meetings and related volunteer projects. "We don't have deep pockets, so we are willing to give our time to repay the place that saved our child's life," says Caroline.

    Both councils are occasionally rocked by the deaths that inevitably occur among a community of cancer patients and survivors. Last year, Jessie Doktor, a 12-year-old leukemia patient and daughter of a pediatric council alumna, passed away, and the adult group lost Viera, 44, who brought his stamina as a former wrestler to his many roles: husband, father of two young daughters, college coach, full-time retail manager, and cancer patient.

    Despite their achievements, the rotating members of the councils continually find new things to work on. "There can always be improvement," says Hristov. "Just when you think things are good enough, you should question yourself." As the Patient and Family Advisory Councils celebrate their 10th anniversary, they will continue to spread the message of patient-centered care so that others can have the same success.

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