Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, April 25, 2017, 5:00pm-6:20pm
Location: Blake Wilbur Room W1084 & Join WebEx
WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx dialog below 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. Attendees must respect the Stanford CF Center cross infection guidelines. Please do not attend in person if you have an active viral infection or any other contagious condition.
Please have this copy of the agenda and attachments with you during the meeting.
- Introduction (5:00 – 5:10)
- Adopt March minutes (5:10)
Please review Linda’s minutes on the blog or via her email previously sent to you
- Chair Nominations/Discussions
Brian will continue on until a new nominee is identified
- Project Update (5:15 – 5:50)
- Transplant Education – Larissa
- Informational Sheet on Masks – Larissa
Larissa will update and share latest version
- CF Encounters – Larissa/Abby
Abby to check with Larissa on participating in project
- Proposed Rewording of Mission Statement/Name change – Jay
- RPQ/MyHealth update – Jay
Continues to support.
- File Management Approach – Jay
DropBox has been evaluated, recommended to link to Council Web Page, Jay to continue evaluation, also to include OneDrive.
- Virtual Clinic Proposal/Online Collaboration – Brian
Volunteers – Jay, Shawn, Angel, Brian, Aimee and Erik are ready to start! Ed will act in the clinician role.
- Coordination with CFF and external clinic development – Shawn
One project approved, Shawn to continue support
- Clinic-Patient Opportunities – Angel/Elika
- Publicize council and council activities
- Continue to complete volunteer requirements
- Future Projects
Hospital RPQ/Inpatient Preparedness
CF Patient Medical Compendium
Top requests for clinic – improvement areas or informational needs
- Final Comments/Discussion (6:00 – 6:10)
Next meeting May 23, 2017
- Closed Session (6:10 – 6:30)