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 ????

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council Date/Time: Wednesday, October 28, 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 September minutes (5:30) Please review Shawn’s minutes on the blog or via his email previously sent to you. For October meeting, consider next meeting may not be until January. 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. Virtual council office hours – Jacob/Shawn/Colleen Investigate further on execute methodology. Potential use of Facebook or another platform such as Instagram. Assume low interest at first. c. Promotion of mentor program – Shawn/Elyse Mary to check on incorporation of support availability to peds prior to transition. May incorporate into office hours. Emphasize informality – this is not social work d. Patient Encounters – Jacob/Colleen Get Colleen & Jacob in contact w/ PFAC education lead e. Clinic-Patient Opportunities – Colleen Talk w/ Dr. Mohabir on clinic needs f. MyHealth update – Shawn Elika is in favor of the idea and will pursue. Shawn will reach out to Elika for update. g. Yoga for CF Patients – Olivia Found volunteer to help get information to CF patients. Will post information on Facebook to measure interest h. Inpatient Preparedness – Shawn Started capturing list of content that would be considered valuable, will send out for review prior to the next meeting. i. Quarterly Newsletter Input – Shawn j. Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse Program contacting patient volunteers k. 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 ????

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

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