Cystic Fibrosis PFAC
Patient and Family Advisory Councils
The Cystic Fibrosis (CF) team is made up of CF families, patients, and a diverse group of care team members. Together this group has worked to strengthen the ties of the CF community in collaborating to improve the overall healthcare experience. Phoenix Children’s leadership and staff members are invited to attend meetings with the overall intent to bring these key decision makers into our discussions on improving the experience for all families who seek care from Phoenix Children’s.
- Created a “memory jogger” form for parents to make the most out of clinic appointments
- Developed a resource guide for families to keep kids entertained during clinic visits
- In partnership with the CF team, planned and launched a Virtual CF Family Education Day
Creating a Culture of Patient and Family Centered Care: From Mike Patten – Former CF PFAC Chair
“As an Arizona native Phoenix Children’s has always been our family’s go-to place for excellent pediatric care. When we got the call that our daughter has cystic fibrosis and that we needed to make an appointment with the CF-accredited care center at Phoenix Children’s, this gave our family a little ray of hope.
Our daughter has been a patient of Phoenix Children’s since 2011, and during this timeframe she has been admitted over a dozen times, been under anesthesia more than 10 times, dozens and dozens of clinic visits, and we have had more X-rays and blood draws then we can count. During every interaction we have had top-quality care from our care teams. I would love for every CF family to have that experience.
CF is not a common disease, and the care teams have always been eager to grow and learn. I want to thank the leadership of Phoenix Children’s for creating a culture of patient and family centered care and showing the willingness to grow together from every interaction with the families they serve.”