Cystic Fibrosis
Patient & Family Advisory Council
About Us
The Adult Cystic Fibrosis Patient & Family Advisory Council (PFAC) serves as a bridge between the patient community and the clinic. Drawing on their expertise in living with and managing a highly complex chronic disease, the PFAC aims to identify and address challenges to a high-quality patient/family partnership with the provider. They aim to represent fellow patients and loved ones as cystic fibrosis standards evolve in the era of highly effective modulators.
Recent Accomplishments
- Recruitment
Recruited two new caregivers to increase representation of the loved ones’ experience – adding another parent of a cystic fibrosis patient, and the PFACs first spouse!
- Presentations at C-I-CARE Management Rounds
The PFAC Chair shared an exemplary experience she had with an inpatient respiratory therapist. In sharing her story, Angela used the patient voice to demonstrate the power of Stanford Health Care’s values.
Another PFAC member shared the group’s experience in co-production of goals between patients and medical teams. He discussed how the PFAC contributed to a realistic, patient-friendly structure for the center’s advanced care planning quality improvement initiative.
- Quality Improvement Work
The PFAC played an active role in helping the Adult Cystic Fibrosis Center, the general medicine teams, and cystic fibrosis patients adapt to a new model of inpatient care. PFAC members conducted interviews with recently admitted patients to identify what is going well and areas for improvement. Patient feedback has been incorporated into quality improvement efforts around this ever-evolving care model.
Provided valuable input on quality improvement efforts in the Cystic Fibrosis clinic around collaboration with endocrine and increasing compliance with the annual oral glucose tolerance test requirement.
Future Goals
- PFAC Goals
Increase knowledge, awareness, and outreach around topics related to PwCF without access to CFTR modulators
- Community Goals
Empower the Stanford Health Care cystic fibrosis community with more information on aging with the disease (like retirement planning and navigating the larger healthcare system) and disaster preparedness
- Department Goal
Host a virtual town hall for the Stanford Health Care cystic fibrosis community
Year Established
2009
Patient & Family Chairperson
Angela
Staff Advisor
Kate Yablonsky, LCSW
Patient & Family Partners
Rebekah D.M.
Michelle G.
Will H.
Angela N.
Jacob P.
Shawn T.
Abhijit T.
Staff Partner
Cristal Willis
We want to grow!
If you’re interested in sitting in on a meeting or joining the PFAC, click the button below or call 650-444-6512 to learn more!
Patients or family members from the CF Adult Clinic are welcome to become Advisory Group members. Not only are family members welcome to join, but they are also encouraged.
2026 Black Belt PFAC Metrics Challenge Winner
Healthcare PX, a non-profit organization dedicated to improving the patient experience recognized five outstanding Patient and Family Advisory Councils for demonstrating how patient partnership leads to measurable improvement. The winning projects show how PFAC input can influence hospital initiatives and produce results leaders care about — from safety and experience to efficiency and quality.
Stanford Health Care's Cystic Fibrosis PFAC worked with clinic leaders to increase the number of patients with documented advance care plans. PFAC members recommended offering dedicated video visits focused solely on advance care planning. The clinic tracked completion rates before and after implementation and increased documented plans from 10% to 38%, making advance care planning a standard part of care for this patient population.