Aug 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, August 26, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled. It is recommended you call in for audio as opposed to using your computer. Advisory Council visitors are welcome. Please have this copy of the agenda and attachments with you during the meeting. Agenda 1. Adopt May minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you 2. Project Update (5:30 – 6:30) a. Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts Elika is promoting need for pharmacist support within clinic. Transitioning patients from peds is helping highlight the need. Virtual visits (pre- and post-clinic) would be very beneficial b. Patient Encounters – Jacob Update from SAYAC PFAC meeting on Thursday to discuss c. Promotion of mentor program – Shawn/Elyse Investigate need on pediatrics side d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, investigate ability to include in virtual visit process. e. MyHealth update – Shawn No update f. Yoga for CF Patients – Olivia Found volunteer to help get information to CF patients. Will post information on Facebook to measure interest g. Inpatient Preparedness – Shawn No input from Living Breath, awaiting further input as captured h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers i. New Member Drive Reminder – reach out to CF patients if you are leading a project 3. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects • Virtual meetings for inpatients – aligns w/ in-patient yoga • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting September 23, 2020