Ambassadors for care
Andrew 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.
Leukemia 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 (see Helping patients support legislation that helps patients).
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.
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