Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, January 23, 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 October minutes (5:10)
Please review Linda’s minutes on the blog or via her email previously sent to you
- Project Update (5:15 – 5:50)
- Research status update – Colleen
- Proposed Rewording of Mission Statement/Name change – Jay
- Patient Survey – Brian
On hold pending Virtual Clinic project
- Virtual Clinic Proposal/Online Collaboration – Brian
Volunteers – Jay, Shawn, Angel, Brian, Ed (clinician role)
- CF Encounters – Larissa
Larissa is continuing to work on the content provided by Devin. Angel will follow up with Jennifer Cannon to gain clinic perspective on the project.
- Informational Sheet on Masks – Larissa
Larissa will talk with Jennifer Cannon about what are the top three masks for travel.
- Inpatient Issue Management Decision Tree – Angel/Jay/Elika
Status on printing/distribution – Angel investigating print options, hopeful delivery in November
- Passport (card used for CF advocacy for other ER visits) URLs – Angel/Linda
Great response, delivered, great job Angel/Linda!
- Coordination with CFF and external clinic development – Shawn
- RPQ/MyHealth update – Jay
Identified replacement, will try to contact before next council meeting. Some inconsistencies have been identified, would like to work with them to resolve.
- File Management Approach – Jay
Initial feedback is good to this point
- Clinic-Patient Opportunities – Angel/Elika
- Publicize council and council activities
- Continue to complete volunteer requirements
- Future Projects
CF Patient Medical Compendium
Top requests for clinic – improvement areas or informational needs
- Final Comments/Discussion (6:00 – 6:10)
Next meeting February 28, 2017
- Closed Session (6:10 – 6:30)