Stanford Medicine Newsletter Updates For the Local Community

 

Healing by design

How patients and families are helping shape new hospital facilities

Mukund Acharya, a member of the Patient and Family Partner Program at Stanford Health Care, consults with architect George Tingwald, MD, director of medical planning, design and construction for the new adult and children's hospitals.

   

Four years ago, Mukund Achar-ya spent a lot of time in the hospital while his wife struggled with terminal metastatic breast cancer. As her caregiver, he learned the ins and outs of hospital life and saw an opportunity to share his experience and offer feedback from a personal perspective. He asked to be part of the palliative care design team at the Stanford Cancer Center, where he worked alongside staff, physicians and other caregivers and families.

"My experience inspired me to act as a patient advocate for integrated palliative care," said Acharya, a retired aerospace engineer. "I saw room for improvement in terms of helping patients learn their way around the system outside of its medical aspects, with a focus on the logistics of treatment and its psychosocial, financial and spiritual support. I felt like I could make a strong contribution to the team effort."

Acharya later became a volunteer in the Patient and Family Partner Program at Stanford Health Care, representing the voices of other patients and families in improving programs and systems throughout the organization. He and his fellow volunteers meet with staff, faculty and administrators to share their unique perspectives on everything from floor plans to paperwork.
Integrating personal experience

Today, the Patient and Family Partner Program includes 120 members, who serve on 14 patient and family advisory councils covering specialties ranging from geriatrics to cancer, cystic fibrosis, emergency medicine and pain. The first group was launched in 2009 to integrate patients' and caregivers' firsthand experiences into the hospital's programs and operations, as well as to help refine plans for Stanford Hospital, currently under construction, and outpatient centers such as the Neuroscience Health Center and Stanford Cancer Center South Bay.

"This program is about engaging patients and families to improve the patient experience," said Mary Song, MPH, manager of the Patient and Family Partner Program and volunteer resources at Stanford Health Care. "No one understands what a patient needs better than someone who has lived that experience as a patient, caregiver or family member. They live it and breathe it every day. Our process is done with patients, not just for patients."

Council members updated a brochure for new patients; helped reduce wait times through changes in the emergency department, mammography center and heart transplant clinic; suggested improvements to meals for hospitalized cancer patients; and created a Facebook page to build community among young cystic fibrosis patients. At the new Neuroscience Health Center on Quarry Road, they provided extensive input on a wide range of elements ranging from carpet colors to hallway handrails, lighting and a simplified check-in system, all to provide safer, more streamlined specialty care.

"Patient and family volunteers are instrumental throughout the organization. The program got its start with planning the new Stanford Hospital and new Lucile Packard Children's Hospital almost 10 years ago," said George Tingwald, MD, AIA, architect, physician and director of medical planning, design and construction for both hospitals. "The concept of indoor and outdoor respites with no clinical services, which are signatures of both new hospitals, stemmed from their own experiences when they sought a place to get away from the buzz of a busy hospital. They championed how important it was to provide space in all patient rooms for family members to sleep."

Packard parent advocates

At the new Lucile Packard Children's Hospital Stanford, the design team met first with patient families, who helped shape the details of patient rooms, services and amenities. From providing visitor sleeper beds to including bathtubs instead of showers, the new hospital features touches large and small that reflect insights from people who have spent large amounts of time by their child's bedside.

"There are things you just don't think about until you walk it from a patient or parent perspective," said Diane Flynn, a Menlo Park mother of three who spent many nights by her youngest child's bedside as he underwent a series of surgeries for a cleft lip. "A hospital needs to look at all aspects of how it provides family-centered care."

Flynn became a member of Packard's Family Advisory Council as a way to give back to the place that helped her son heal. She and other parents provided feedback on many of the new building's design elements, from a family lounge, laundry facilities and family kitchen on every patient floor, to in-room phone chargers, kid-friendly interactive art and an overall focus on light and nature.

"Members of the Family Advisory Council are integral to our process of improving patient care because they are adept at converting their personal experiences into positive change," said Karen Wayman, PhD, director of the hospital's Family-Centered Care program.

Packard's Family Advisory Council includes about 40 parents and family members in nine councils who deal with key issues such as safety, oncology and transitioning to adult services. "The councils act as focus groups, build consensus and help brainstorm solutions," Wayman said. "Their input is a real advantage in terms of helping to improve the care and safety of our young patients."

Added Tingwald, "The patient, parent and caregiver groups are considered experts, and their comments are taken very seriously. I am constantly surprised by what they tell me, since they see things quite differently than staff or administrators. They are integral to all our efforts, and our design work is sharper because of their insights. Stanford has been a real leader in this movement, and I'm constantly asked how we make it work. My answer sounds simple: 'We engage early, often and intensely, and we listen.'"

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