Spearheading change
A patient has just been diagnosed with sarcoma and wants to talk with someone who's "been there." Volunteer Sally Ryan locates a match for her through Dana-Farber's One-to-One: The Cancer Connection program. The person will, in turn, call the patient and help answer her questions or allay fears she may have about her treatment.
Now numbering about 100 volunteers, the 11-year-old One-to-One program represents another way that patients and families contribute to the workings of the Institute on a daily basis.
"It's very soothing for patients to talk with someone who has gone through what they've gone through," says Ryan, a cancer survivor who helps manage the program. "It adds a dimension of personal care that's a little different from what one gets from a professional."
According to Jim Conway, DFCI's senior vice president and chief operations officer, patient advocates have improved the quality of care at the Institute by raising concerns in "real time" that were previously identified only in patient-satisfaction surveys. They bring a sense of openness to many proceedings and help the Institute set priorities.
Patients were instrumental, for example, in the opening of the Eleanor and Maxwell Blum Patient and Family Resource Center, a storehouse of books, videos, Web sites, and other cancer-related information. And they pressed for creation of the Leonard P. Zakim Center for Integrative Therapies, which honors the memory of its namesake, a multiple myeloma patient and adult council member who sought to give patients more control over their care with the help of supportive therapies such as massage and acupuncture.
This patient-centered approach can lead to unexpected initiatives, such as the Side by Side newsletter (founded by the late Geri Malter to inform and inspire), or change a project's course in mid-stream, like switching a carpet color to one more "patient-friendly."
"I could be 'doing lunch' or shopping, but there's a reason I'm here. This fulfills me as a person."
— Martie Carnie
A poignant example began with a phone call Conway received a few years ago from the late Eric Berman about overcrowded conditions in the Dana 1 infusion area. Conway went down, met with the nurse manager, patients, and family members, and agreed that the lack of patient privacy and nursing workspace was unacceptable. Existing plans to renovate the unit were halted, and patients and staff gathered to reassess them. The area is now much more comfortable for all.
"I have no idea how many people Eric helped with that call," Conway remembers. "Patients and families remind us that we're excellent, but not perfect."
Conway's support for patient-family activity has been critical to its success, many attest. "Jim realized from the beginning this would mean changing forever some of the traditional ways an academic medical center functions," notes Johnson of the Institute for Family-Centered Care.
- Next: Giving and gaining
- Page: 1 | 2 | 3 | 4
