Patients and families make a difference at Dana-Farber
By Debra Ruder
The Jimmy Fund Clinic play area is bustling as usual, and volunteer Gary Jernegan sits on the sidelines and scans the room. Spotting a mother who appears anxious, he notices that her young daughter needs help at the paint table. "Hi, sweetie, want to wipe your hands?" Jernegan says, grabbing some paper towels to clean the mess.
Renovations to the Dana 1 adult clinic have involved collaboration between staff and patients, such as facilitator Virginia Carr (left) and cancer survivor Joe Nies.
He takes the opportunity to sit by the child's mother and grandmother, then begins chatting, ever so cautiously, with them. After hearing their story — the little girl's cancer has relapsed — he shares his own experience at the clinic, where his daughter was treated successfully for a rare lymphoma five years ago.
Once he has solicited comments about how the child's treatment is going, Jernegan offers his business card in case the family wants to talk some more. It is one of several conversations he will have that day, and has at the clinic each month, to get feedback on what is going well — and not so well — at Dana-Farber.
"I can't do anything medically," says the cop-turned-businessman from Ipswich, Mass., "so I'll do anything I can for the parents."
Jernegan's "rounds" grew out of his membership on the Pediatric Patient and Family Advisory Council, one of two such bodies aimed at involving DFCI patients in planning, decision making, and improvement efforts throughout the Institute.
The councils are the main (but not only) mechanisms for tapping the skills and support of patients, survivors, and family members, who regularly help Institute staff identify and solve problems, celebrate triumphs, and understand how it feels to have a cancer diagnosis. "Patients have become integral to our operations," reflects Patricia Reid Ponte, RN, DNSc, senior vice president for Patient Care Services and chief of Nursing. "Patient and family involvement has become an expectation, rather than an exception."
"Involving patients and families has fundamentally changed the way that business is done here."
— Cynthia Medeiros, LICSW
Although other health-care centers around the country have advisory councils and embrace the concept of patient-centered care, few have woven them so thoroughly into the fabric of the organization, says Beverley Johnson, president and CEO of the Institute for Family-Centered Care in Bethesda, Md.
"Dana-Farber is a national leader in welcoming patients and their families as true partners in ensuring the quality of care," she notes. "In addition to the exceptional dedication of many patients and families, I believe the Institute's success is due to the commitment from the top: the administrative and clinical leaders and trustees who have invested in this unique collaboration."
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