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

July 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, July 22, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form. 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 Things looking hopeful for pharmacist addition to adult staff. Transitioning patients from peds is helping highlight the need. Interested in the possibility of virtual visits pre- and post-clinic visits b. Patient Encounters – Jacob Response received, a fellow PFAC is looking to have an education focused event for medical students/residents that may be a chance to collaborate as there scope has not been defined. Seems like an interesting concept, would align with our other efforts in helping educate medical students. Could be expanded to include “refresher” newsletters to current practitioners. Still missing is a methodology to capture information which would seem to need a broad scope, perhaps Stanford-wide c. Promotion of mentor program – Shawn/Elyse Posted on Facebook, any additional thoughts? d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, so questionnaire will be updated and posted on Facebook page as to its potential use. e. MyHealth update – Shawn No update f. Yoga for CF Patients – Olivia Primary focus is yoga for CF patients. Suggestions to contact Stacy at CFRI as well as suggesting a routine that can be used for in-patients g. Inpatient Preparedness – Shawn Initial ideas – potential to work with Living Breath h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program ending for this year 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 • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting August 26, 2020

June 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, June 24, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form. 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 Send questions to Amy. Next steps would be a focus. b. Patient Encounters – Jacob Contacted education PFAC – no response yet. Brian to follow-up with PFAC lead c. Promotion of mentor program – Shawn/Elyse Find ways to make people aware of the mentor program d. Clinic-Patient Opportunities – Shawn/Kate Patient questionnaires should be quite valuable for telehealth clinic visits, so questionnaire will be updated and posted on Facebook page as to its potential use. e. MyHealth update – Shawn No update f. Yoga for CF Patients – Olivia Primary focus is yoga for CF patients. Suggestions to contact Stacy at CFRI as well as suggesting a routine that can be used for in-patients g. Inpatient Preparedness – Shawn Initial ideas – potential to work with Living Breath h. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program ending for this year 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 • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting July 22, 2020

May Agenda 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, May 27, 2020 from 5:30pm-6:50pm Location: WebEx Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form. 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 February 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 Update – contact Brook for report b. Patient Encounters – Jacob Update – check with new PFAC on collaboration c. Clinic-Patient Opportunities – Shawn/Kate • Patient questionnaires should be revisited, is considered valuable. Shawn to check with clinic during next visit. d. MyHealth update – Shawn Check on incorporation of questionnaire (above) e. Bodywork & Value for CF Patients – Olivia Has been collecting information related to bodywork highlighting benefits, primarily focused on children and young adults. Will summarize as a resource for patients. f. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me update as available g. Inpatient Preparedness – Shawn Initial ideas h. 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