25 Years of Dana-Farber's Patient and Family Councils
May 31, 2024
By Saul Wisnia
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.
"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."
Council members share this pride, choosing to return to where they were treated or loved ones were supported to make the road smoother for other patient families. Meghan Shea, current co-chair of the pediatric PFAC, says that serving on the council provides her with a special connection to her late brother Matthew as well as a way of giving back to Dana-Farber for the decade of care he received there.
"Matt's cancer journey and passing was one of the core fundamental experiences of my life," says Shea. "I feel like if I'm an expert in anything, part of that expertise would be as the member of a pediatric patient family. And if any of that knowledge can be valuable in the treatment of other children and young adults with cancer, and their families, I can think of nothing better to do in service to Matt and our shared experience."
Early Patient Champions
The concept of organized groups of patients and family members advising doctors, nurses, and hospital administrators was novel when Jim Conway, then-executive vice president and chief operating officer at Dana-Farber, launched the PFACs in 1998 alongside patient volunteers including Martie Carnie. Although children's hospitals engaged parents as a part of the health care team to advocate for their sons and daughters, it was not standard practice in hospitals for patients of any age — especially at centers devoted to specialized diseases like cancer.
"Children needed their parents and families to be actively involved in their care, but in the adult care world there was the perception that family members just got in the way," recalls Susan Grant, DNP, RN, who was chief of Nursing and Patient Care Services at Dana-Farber during this period. "Back then, there was a preconceived notion and culture in health care that the doctor knew everything, and you did not question them. The thought of engaging patients and families as equal members of the health care team at the center of care delivery was unheard of at the time."
Led by David G. Nathan, MD, who served as Dana-Farber president from 1995 to 2000, a core team including Grant, Conway, and nurse leader Sharon Lane, MS, RN, helped Dana-Farber grow into a national leader in patient safety with a steadfast determination to improve its patient-clinician communication.
The first order of business was defining just how much power the councils would have.
"There was serious conversation amongst our founding members, and a lot of back and forth, over the word 'advocacy' versus 'partnership,'" says Deborah Toffler, MSW, LCSW, senior director of Patient Care Services. "Should the councils be an advocacy group, or should they be in partnership with the institution? Ultimately, they decided partnership. It was important for the councils to be engaged in the conversation, sharing the table to understand our organizational needs and also express their own. We knew that focus groups were insufficient for a true partnership. Dana-Farber promised to really listen, even if that meant shifting in unplanned directions. These collaborative efforts have consistently yielded superior solutions, programs, and results."
Victoria Baggio, MSW, who has succeeded Toffler and Stahl in managing the PFACs, says the combination of council members sharing insights and faculty and staff willing to listen was a recipe for success from the start.
"There is real humility on the part of departments coming to PFAC, and asking for their feedback, because that's not always an easy thing to do," says Baggio. "Those who partner with PFAC in order to get that feedback, and learn from the experience, can change the trajectory of a project for the better."
One of the earliest examples of PFAC success was spearheaded by inaugural council member Leonard "Lenny" Zakim. The Civil Rights leader and multiple myeloma patient was a fierce supporter of utilizing integrative therapies including acupuncture and massage as part of cancer treatment. He led a task force to make such offerings more accessible to patients, with his efforts leading to the creation of the Leonard P. Zakim Center for Integrative Therapies and Healthy Living, which opened at Dana-Farber in 2000.
Edward J. Benz Jr., MD, succeeded Nathan as Dana-Farber president that same year, and like his predecessor championed the involvement of patients in clinical operations decision-making. Soon, PFAC members were invited to sit on the Joint Committee on Quality Improvement (QI) and Risk Management, a board-level body that approved Dana-Farber's QI plan and were working with teams across the Institute to design educational programs and improve processes including clinic wait times.
PFAC members were even involved in making sure candidates for senior leadership roles at Dana-Farber were committed to patient-centered care.
"One of the most challenging and thought-provoking parts of my interview process was the interview I had with two PFAC members," recalls Anne H. Gross, PhD, RN, FAAN. "They wanted to know my philosophy about patient engagement and family engagement. I'll never forget it."
Patients and their loved ones are the center and the purpose of all that we do — they are our true north.
Gross got the job, and today is Dana-Farber's senior vice president for patient care services and chief nursing officer. She has frequently partnered with the PFACs on initiatives during her tenure, and credits the councils for helping Dana-Farber achieve Magnet designation from the American Nurses Credentialing Center five straight times since 2005. This prestigious recognition is considered a benchmark for the quality of care patients receive, and less than 1% of an estimated 6,200 hospitals and health systems nationwide have matched Dana-Farber's five consecutive designations.
"Patients and their loved ones are the center and the purpose of all that we do — they are our true north," says Gross. "Working with the PFACs is great, because these are people who return to Dana-Farber with the sole purpose of making other patients' and families' journeys better. Beyond that, they help us as nurses and clinicians to better understand the person in front of us, who is someone much greater than their disease."
Shaping the Yawkey Experience
Perhaps nothing better embodies the power and purpose of the PFACs than the Yawkey Center for Cancer Care, the 14-floor clinical care facility that opened at Dana-Farber in 2011. During the five years it took to plan, design, construct, and fill the structure, adult and pediatric council members served on 33 different user groups — adding input on everything from the layout of exam rooms to the building's color scheme and artwork. They insisted that the breathtaking, high-windowed views of downtown Boston be reserved for patients undergoing infusions. And, knowing that infusion chairs are home to some patients for many hours a day, they held a "chair fair" where patients and family members played Goldilocks, trying out different chair options before voting on their favorite.
As Benz recalls, the determination of the PFACs to play a key role in the Yawkey Center started early.
"One of my favorite memories is attending a meeting where we were going to do the final selection of our architects," explains Benz. "It came down to two finalists, one group from Boston — which would have had many advantages — and one from Washington, D.C. Going in, our facilities group and most of us thought that the plan that the Boston architects had put forward was going to be the one we selected. We had a number of patients who had been involved in all the planning so far listen to the presentations, and they vetoed the Boston architect. For what they felt coming here for care should be like, they thought the other architect would do a better job. We agreed with the points they made, and it proved to be exactly the right decision."
The architects wound up adopting several key alterations by PFAC members to the building's original design. Wary of the potential for massive traffic back-ups that would ensue on narrow Jimmy Fund Way as patients were dropped off for appointments, the councils proposed having all Yawkey parking be below street level, highlighted by a patient-only valet service that quickly drew raves for its comfortable waiting area and impeccable service — including (if needed) guided walks at the pace of your choice to and from the lobby check-in area.
"Dick Tonachel and his wife, Anne, who were both PFAC members, were integrally involved in creating the Yawkey valet service," says Wendy Gettleman, vice president of Facilities Management and Real Estate. "A below-grade, welcoming parking program was something nobody had tried before in Boston, and it worked beautifully. Even today I get an amazing number of letters every month from patients and family members thanking us for our patient-centric valet program. It's our first and last opportunity for us to make an impression and be there for our patients, and there is nothing stronger than that."
The most logistically challenging change, according to Gettleman, was the proposal by Patience Experience Committee member Maureen Costello to add a two-story-tall healing garden filled with plants, trees, benches, and floor-to-ceiling windows. Although the footprint of the Yawkey Center was tight on all sides, Gettleman and her team worked with Costello and others to make the garden a reality. Today it remains a popular place for patients, families, and staff to take a brief respite from the intensity of fighting cancer.
"There was this amazing camaraderie and sense of drive, because everybody wanted to make that a wonderful place for patients and families," recalls Nusbaum. "Working on the Yawkey Center was really the privilege of my life. Nothing even comes close to the feeling of important contributions that we as a team made to that building."
An Enduring Legacy
Although the COVID-19 pandemic halted on-site volunteering at Dana-Farber for two years, PFAC stayed on track by smoothly adapting to virtual meetings. Today's monthly sessions are hybrid, allowing members like current adult PFAC co-chair Austin Sarat to take on a major role despite living two hours from the Longwood campus. A survivor of five different cancers, Sarat says his experience on the council has been incredibly gratifying — and has had a positive impact on other areas of his life.
"Being on the PFAC inspires me everywhere and in everything I do," says Sarat. "I'm not there to be an advocate for any particular cancer that I've had, I'm there to help serve the interests of patients, families, and caregivers now and in the future regardless of the kind of cancer they or I have. That commitment to disinterested service inspires me."
Current pediatric PFAC co-chair Katherine Page says she knows she can never adequately thank Dana-Farber for helping her toddler son Freddie through neuroblastoma treatment. But she believes bringing her passion for patient and family communication to her PFAC role is a great place to start.
"I got involved because of the whole 'thank you' and 'pay it forward' thing, but also because I came to understand that even when Freddie was done with active treatment, his experience was not over," Page says. "He's still dealing with side effects, doctor's appointments, and the mental health aspects of his cancer. Navigating all of that can be a challenge, and I want to help others make the right connections."
PFAC co-chairs like Sarat and Page all serve two-year teams, and council membership is now limited to six years to allow for increased opportunities for more patients and family members to participate. Diversity in all its forms — age, race, ethnicity, sexual orientation, socioeconomic, cancer type, location of treatment — is a goal for both councils, which are always striving to better represent the patient population they serve. Those wanting to join but not able to make the 5-to-10-hour monthly commitment to PFAC now also have a new option: as "E-Advisors," they can help virtually in various ways including engaging in research, advocating for legislative initiatives at the state and national level, and providing input on patient education materials.
Dana-Farber's plans to build and open the region's only dedicated inpatient cancer hospital later this decade will provide another opportunity for the PFACs to shine. Council leaders are already working with executive leadership on early planning for the facility, and Gettleman says more than 20 design-related user groups will all include PFAC members.
"I think people feel we have a great opportunity in front of us to do what we did with Yawkey again," says Gettleman.
Current Dana-Farber President and CEO Laurie H. Glimcher, MD, agrees.
"I have never seen a place as intensely collaborative as Dana-Farber," says Glimcher. "Collaboration is in our DNA. Everybody embraces the mission here, and we are all committed to doing what is best for our patients and families. Their voice is crucial to that goal — including in our proposed inpatient cancer hospital."
From first plans to infusion chairs, the PFACs will help ensure that is the case.
