March Board Meeting

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, April 22, 2021 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 January minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. 2. Council office interest Volunteers – what they would like to bring to the council office they are interested in Vote for preferred candidate 3. Stanford CF Quarterly Newsletter – Due start of April 4. Project Update (5:30 – 6:30) a. Virtual council office hours – Jacob/Shawn/Colleen Initial plan discussed and input captured. Jacob will lead with respect to making it available on Instagram. b. Clinic-Patient Opportunities – Shawn No feedback as of yet. Shawn to check in during clinic visit c. Inpatient Preparedness – Shawn Captured feedback, looked good. Soon to be posted on Facebook. d. Discuss potential for enhancement opportunities of virtual interaction between clinic and CF patients – similar to Town Halls that the transplant team have produced. – Elyse Will re-evaluate in the future e. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me is active, virtual aspect may be taking away the perceived uniqueness of the opportunity f. New Member Drive Reminder – reach out to CF patients if you are leading a project 5. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects Patient Encounters – Jacob/Colleen Yoga for CF patients Extensions of pharmacist/virtual visit opportunities 6. Final Comments/Discussion (6:30 – ???) Next meeting May 26, 2021

Feb 2021

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, February 24, 2021 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 November minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. 2. Council office interest Volunteers – what they would like to bring to the council office they are interested in Vote for preferred candidate 3. Project Update (5:30 – 6:30) a. Virtual council office hours – Jacob/Shawn/Colleen Initial plan discussed and input captured. Jacob will lead with respect to making it available on Instagram. Ensure Mary notifies caregivers that there is support for them during transition also. b. Clinic-Patient Opportunities – Shawn No feedback as of yet. Shawn to check in during clinic visit c. Inpatient Preparedness – Shawn Captured feedback, looked good. Soon to be posted on Facebook. Working with Kevin H. on identifying issue with posting to blog webpage. d. Discuss potential for enhancement opportunities of virtual interaction between clinic and CF patients – similar to Town Halls that the transplant team have produced. – Elyse Council members to give additional consideration with respect to how to enhance current clinic offerings, incorporating current newsletters & educational conference into comprehensive plan e. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me is active, virtual aspect may be taking away the perceived uniqueness of the opportunity f. New Member Drive Reminder – reach out to CF patients if you are leading a project 4. Reminders a. Publicize council and council activities b. Continue to complete volunteer requirements c. Future Projects Patient Encounters – Jacob/Colleen Yoga for CF patients Extensions of pharmacist/virtual visit opportunities 5. Final Comments/Discussion (6:30 – ???) Next meeting March 24, 2021

Jan 2021

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, January 27, 2021 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 November 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 Sideline for now – a funding issue which we have no influence b. Virtual council office hours – Jacob/Shawn/Colleen Initial plan discussed and input captured. Jacob will lead with respect to making it available on Instagram. Investigate method to improve awareness for transitioning pediatric patients. c. Clinic-Patient Opportunities – Colleen Shawn to contact Paul to get clarification on “clinic flow” – should be prescriptive with regards to suggestions on questionnaire, desired contacts, and time capture. Pull in MyHealth update to this. d. Inpatient Preparedness – Shawn Captured feedback, looked good. Provided as input to quarterly newsletter. Will be posted on blog as well as Facebook. e. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Walk with Me is active again and still going well. f. 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 Patient Encounters – Jacob/Colleen Yoga for CF patients Extensions of pharmacist/virtual visit opportunities 4. Final Comments/Discussion (6:30 – ???) Next meeting February 24, 2021

Nov 2020

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, November 25, 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 October 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 Internal to clinic discussion b. Virtual council office hours – Jacob/Shawn/Colleen Waiting for feedback from clinic on use of Instagram. Idea is to also support mentor type activities as part of the council office hours, so mentor project is now part of this. Shawn to check during meeting with Meg. c. Patient Encounters – Jacob/Colleen Get Colleen & Jacob in contact w/ PFAC education lead d. Clinic-Patient Opportunities – Colleen Talk w/ Dr. Mohabir on clinic needs e. MyHealth update – Shawn Elika has updated questionaire. Colleen & Mary to pursue encouragement of MyHealth to incorporate. f. Yoga for CF Patients – Olivia Person formulating program ideas targeted for February newsletter g. Inpatient Preparedness – Shawn Captured feedback, looked good. Provided as input to quarterly newsletter. Will be posted on blog as well as Facebook. 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 • Family Planning – TBD 4. Final Comments/Discussion (6:30 – ???) Next meeting ????