Cystic Fibrosis Patient and Family Advisory Council “Do you hear the call to serve the CF Community?” ACFPFC March 10, 2018 Unrestricted

Mission Statement The Stanford Adult CF Patient & Family Advisory Council (CF-PFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford Health Care and in The Cystic Fibrosis Center at Stanford including pediatric, transitional and adult care at Lucile Packard Children’s and Stanford University Hospital.

Cystic Fibrosis Memorial Space Purpose: To have a spot within Stanford dedicated to those we have lost to CF Status: Instead of a space, a piece of art in the hospital will have an associated plaque dedicated to those CF patients we have lost. A benefactor has generously provided the required funds, and work is being done on finalizing artwork selection Next Steps: Complete work with Stanford Patient Relations Services.

Journey to Transplant Purpose: To detail the journey from evaluation, being listed and ultimately receiving a bilateral lung transplant. Status: Under review for final publish. Next Steps: Project complete

Stanford Hospital and Clinics Patient Encounters Purpose: Capture anonymous stories from patients on interactions with healthcare professionals, both positive and negative, which can be used as a teaching tool for caregivers. Status: Stories have been shared with Stanford PFAC and there is interest in expanding this concept within Stanford Next Steps: Identify opportunity and best approach to expand concept within Stanford Hospital.

Virtual Clinic Purpose: Promote use of virtual tools to improve quality of healthcare for CF patients. Status: FEV1 study showed that patients could support activities associated with virtual healthcare and would see benefits from doing so. This concept is being adopted by other groups so it will happen. Next Steps: Looking for next opportunity to pilot this concept, ideally with a partner

Information Sheet on Masks Purpose: Develop information pamphlet on appropriate selection and usage of masks based on health status and need. Status: Available for patients Next Steps: Project Complete

Bodywork and CF Purpose: Research how bodywork like massage and chiropractic can help relieve CF symptoms, by talking to people with expertise in the field, and also interviewing CF patients. Bring together information for the CF community about easy ways to incorporate bodywork into their medical regimen. Status: Reached out to several professionals with interest in the subject, and currently compiling research on how massage helps people with CF Next Steps: Interview professionals and CF patients, and compile research into a document resource for CF patients at clinic.

Collaboration and Support Providing Vision and Input to the MyHealth Development team Patient Only Facebook Page Blog/ Website General Stanford Volunteering Support

Future Activities Give us Suggestions!

Council Members Brian Eddy CF Adult Shawn Taylor CF Adult Colleen Dun RRT, RPFT, CCRC Elyse Goldberg CF Adult Ed Kinney Volunteer / CF Groupie Amy Baugh CF Caregiver Olivia Davis CF Adult Jacob Fraker CF Adult

Join Us If you hear the call to serve your CF Community and are interested in participating in the council please contact our Membership Chair Colleen Dunne @cedunn@stanford.edu