Clad in a white hard hat, standing on the ground floor of Dana-Farber's then-half-completed Yawkey Center for Cancer Care, Marlene Nusbaum stared down at the architectural plans spread out before her. She tried to think of every concern voiced by her team at its latest meeting.
It was 2010, and Nusbaum was co-leading Dana-Farber's Patient Experience Committee, helping to build the brand-new outpatient cancer center. She knew that in just a few months' time, thousands of adult patients would be coming to the facility daily for their exams and treatment. Did the architect's vision consider how these individuals and their loved ones would arrive to and flow through the building? Was there adequate lighting in the areas that needed it most? Were the exam rooms big enough to accommodate several family members, and would patients be able to get their infusions on the same floor where they saw their clinicians?
Nusbaum brought no prior design experience to her role, but she did possess even more crucial expertise: she had gone through breast cancer treatment at Dana-Farber a few years before. And like other members of Dana-Farber's all-volunteer adult and pediatric Patient and Family Advisory Councils (PFACs), she and her team were getting a chance to ensure each step of the Yawkey Center's construction and operations planning was done with these most important end users in mind.
For senior leadership, faculty, clinicians, administrative staff, and fellow volunteers who have worked alongside PFAC members in the 25 years since the two councils were formed, these separate groups have shared a common goal as critical allies in virtually every aspect of care. The PFACs strive to help improve the patient experience and ensure patient- and family-centered care across the Institute while adhering to four core principles: dignity and respect, information sharing, participation, and collaboration.
Whether it is making sure medication labels are sized to ensure both readability and privacy, advocating for expanded patient and family support services, or helping improve infrastructure and physical spaces, council members consistently prove themselves indispensable across the organization. In addition to giving back to the organization and people that cared for them, they are paving the way for future patients and families to have the best possible experience due to their insights.
"The voice and perspective of patients and families is integrated into everything we do at Dana-Farber," says Patricia Stahl, MEd, director of Volunteer Services and Patient Programs. "The individuals that sit on our PFACs have gone through a life-changing experience and come to their role with a new perspective and an enormous passion for making sure that we stay true to our mission and values. It is an honor to serve alongside them."
More on 25 years of PFAC: https://lnkd.in/ePG4p3MA
