Angel Mammino-Haynes, Secretary CF PFAC March 12, 2016 Cystic Fibrosis Patient and Family Advisory Council “Improving the Adult Care Experience at Stanford” Angel Mammino-Haynes, Secretary CF PFAC March 12, 2016

Mission Statement The Stanford Adult CF Advisory Council (ACFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford University Hospital. The Advisory Council is committed to the betterment and excellence of the entire Cystic Fibrosis Center at Stanford including pediatric, transitional, and adult care at Lucile Packard Children’s and Stanford University Hospitals.

Return Patient Questionnaire Purpose: Helps patients review and focus on what they would like to get out of their clinic appointment. Overall feedback: The Team's and Patient’s feedback are positive. It's a great form that enables the medical team and patients to all be on the same page as to on what is to be expected during a clinic visit.  Goal: Upload to MyHealth so patients can complete the form prior to clinic visit.

Parking Perks Purpose: Collaborated with Parking and Transportation and the CF Clinic to provide complimentary parking perks for CF patients who have special situations / unique cases. Who will use this: CF Patients who require oxygen (including pre and post lung transplant) Process: 20 One time use Executive Parking Passes are given to Meg Dvorak (Social Worker) to hand out to CF patients who fall under the requirements to park at any of the Stanford Hospital Valet Areas. Update: Parking Pilot run is complete. We are working on looking into funding to help the clinic get another batch of passes.

Decision Tree Brochure Outpatient Purpose: Gather and collect data, publicizing what options are available to the patient depending upon the type of issues they have, and what their escalation path should be. Categories: Clinic related Issues & Provider and Staff Member. Collaborated with CF Team & Guest Services to narrow escalations paths. Brochure available in clinic, and given to the Social Worker to hand out to patients. Inpatient Brochure: Currently working on the 1st draft. Our goal is for this to be a part of the admission package for patients.

CF Encounters Pilot Kickoff Purpose: The content that is produced is not to be presented as issues that the clinic need to address or answer to. It is simply a collection of stories to help them understand what the patient is hearing when these things are said. Goal: For educational purposes and targeted for the clinic, with no emotion as the stories are rewritten to ensure no hurt feelings. Collected and gathered stories from CF patients. CF Hurts, Looks Aren’t Everything, Referring to CF Patients, Congratulations on Hard Work, Welcoming a New Patient, etc.. Updates: Working with Clinic staff to help introduce document during the CF Monthly Meetings. Guest Services to use the CF Encounters project for other PFAC groups throughout the hospital.

CFF National Project Alignment Purpose: In collaboration with CFF we are participating in the CN3 Project. Goals and topics discussed included curing CF, several groups focusing on individual goals: ways for patients to stay out of the hospital, and making sure patients do not feel alone or helpless. General discussions looked at ways to improve communication between staff and patient Update: The CFF has granted funding to continue developing the CF Care Model of the future. Entering the Pilot Phase which will last for the next 3 years. Pilot Phase: CF Pilot Learning Network (PLN) will include a group of participating care centers that will work together on continuous, collaborative quality improvement and innovation projects.

Collaboration and Support Blog/ Website Patient Only Facebook Page MyHealth

Current Activities Virtual Healthcare and Online Collaboration Gather feedback and data from current pilot run going on at Stanford. Adult Cystic Fibrosis Passport Partnering with the Pediatric Council to help create a Adult CF Passport.

Council Members Shawn Taylor CF Adult Colleen Dun RRT, RPFT, CCRC Brian Eddie CF Adult Jay Archibald CF Adult Linda Burks Parent Devin Wakefield CF Adult Monica Wood CF Adult Erick Burton CF Adult Angel Mammino CF Adult Lauren Catron CF Adult Ed Kinney Volunteer / CF Groupie