A group of parents gather in a conference room at UF Health Shands Children’s Hospital. They smile and greet each other, unified by the resolute strength that comes from parenting a sick child. Their stories, heartbreak, experiences and coping skills are beautifully unique, but they have a common goal: to help improve the care their children and other pediatric patients receive.
Over the last few years, patients and their family members have participated in a variety of improvement activities across UF Health Shands. They provide a unique perspective to challenges and help faculty and staff understand processes, services and care from patient and family viewpoints.
UF Health Shands has two active Patient and Family Advisory Councils. One focuses on pediatric care, while the other evaluates cancer care services. A third group, which will give input on adult emergency care and non-cancer adult inpatient care, is being formed.
“These patients and family members are intimately familiar with our processes and have valuable knowledge about our health system,” said Christine Cassisi, UF Health Sebastian Ferrero Office of Clinical Quality and Patient Safety patient experience director. “They have great insight into what we do well — delivering top-notch care— and where we fall short.”
Marsha Tripp is on the pediatric Patient and Family Advisory Council, which was developed in 2013. She is one of eight parents of children with chronic illnesses who meet with staff 10 times a year to discuss improvement activities.
Tripp, like the other advisers, knows UF Health well. Her daughter, Kirstyn, was diagnosed at 7 days old with a rare metabolic disorder. A congenital heart condition was discovered a year-and-a half later. Kirstyn, 11, has been in and out of the hospital ever since.
“Families need to have a voice in health care,” Tripp said. “Our children are our passion and that’s what makes us want to help. We want to be heard and we want people to know what we’ve been through so they can make things better.”
During advisory council meetings, faculty and staff ask the groups about everything from discharge instructions to interior design upgrades.
“Without UF Health Shands my daughter wouldn’t be here,” Tripp said. “They are the wind beneath her wings, so in a way that’s one of the reasons I’m on this council — to give back.”
Recently, the Pediatric Patient and Family Advisory Council helped improve UF Health Shands’ Condition H program. Condition H allows patients and families to call an emergency team of medical staff if they feel like they are in a crisis situation or their needs are not being met. When the program was discussed with the council members, staff learned that patients and their families had little or no knowledge of the program, exposing a schism between how staff communicated about the program and how patients received the information.
The council reviewed the Condition H printed material and helped design new communication tools to address the issue. Their next step will be working with leaders and staff at UF Health Shands Children’s Hospital to improve awareness and communication between clinicians, patients and families.
“Our pediatric advisory council parents have helped us understand that they need to hear the message differently,” said Cassisi, who helps facilitate the councils. “To them, Condition H means that we’re willing to go the extra mile to ensure their children’s safety so that if a problem arises, their children will get precisely what they need. That’s what we needed to communicate.”
Recalling experiences in the hospital is often difficult for the patients and family members on the council. It’s not easy to relive a time of pain and uncertainty, when their health or a loved one’s well-being was uncertain.
“There’s still sadness there for me and it’s hard to see other families go through the same heartbreak,” said Kristen Rose, a parent on the pediatric advisory council. Her son William has congenital heart disease and is recovering from recent open-heart surgery.
“But as long as I know I’m helping future patients and their families, I’m able to refer back to those tough times with a positive outlook.”
The cancer care services team takes a different approach to improving processes. The group is combing through the entire experience of being a UF Health Shands Cancer Hospital patient, from his or her first contact with the system through outpatient, emergency and inpatient care.
In addition to the councils, several advisers are embedded in process-improvement teams across the organization. A multidisciplinary group, which includes radiation oncology and hematology/oncology staff, faculty and leaders along with other staff and patient advisers, has tackled large and small projects.
Based on the team’s suggestions, the joint waiting room in the UF Health Medical Oncoloy — Davis Cancer Pavilion and the UF Health Infusion Center — medical plaza was improved to make it more welcoming and comfortable for patients. Renovations included additional seating, making the space brighter and improving the visibility of check-in desks.
“As we continue to involve patients and families in our quality and patient safety initiatives and process improvements, we will accelerate the advances we are making,” Cassisi said. “We’re ensuring from the outset that the solution we envision really addresses the problem from the patient’s perspective.”