Notes for Sept Advisory Board meeting

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, September 23, 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 August 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. Pharmacy aide for CF clinic – 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 Get Colleen & Jacob in contact w/ PFAC education lead c. Promotion of mentor program – Shawn/Elyse Mary to check on incorporation of mentor availability to peds prior to transition Colleen to talk with Siri on mentoring program at CFRI 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 Need a contact for MyHealth to address patient questionnaire availability online. Colleen & Mary to investigate further. 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 Will check into documenting tips for people heading into the hospital h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers i. Virtual council office hours – Jacob/Shawn Informal office for discussions, availability for new patients transitioning. Incorporate virtual meetings for inpatients j. 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 • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting October 28, 2020