Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, August 23, 2016, 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 July minutes (5:10)
Please review Angel’s minutes on the blog or via her email previously sent to you
- Project Update (5:15 – 5:50)
- Proposed Rewording of Mission Statement/Name change – Jay
Results of vote and status update
- Patient Survey – Brian
Check with Joan on survey tools
- Virtual Clinic Proposal/Online Collaboration – Brian
Plan is to put together a small pilot with volunteers from the council and a contact from the medical community (Stanford or CFF). Shawn will contact CFF personnel who may be interested in helping us. Brian to re-engage with potential hardware partners as well as get Larissa further involved.
- CF Encounters – Larissa
Larissa coming up to speed
- Informational Sheet on Masks – Larissa
Will send out a proposal before next meeting for council review.
- Inpatient Issue Management Decision Tree – Angel/Monica/Jay/Elika
Plan to go ahead and implement. Recommendation to contact Meg and ensure that any information share with her is understood to be confidential.
- Passport (card used for CF advocacy for other ER visits) URLs – Angel/Linda
Resolution of clinic-patient opportunity below will allow the finalization of the passport cards. Jay suggests checking into a laminated pocket that may be useful for the passport card, advertised at Fry’s.
- Coordination with CFF and external clinic development – Shawn
- RPQ/MyHealth update – Jay
Action Items : Jay to contact Joan for Christian replacement
- Clinic-Patient Opportunities – Angel/Monica/Elika
Action Items :
New request, find out the concerns by the clinic relative to honoring patient requests for providers to wear masks.
- Action Items (5:50 – 6:00)
- Joan – update on file storage recommendation
- Colleen – Check with Colleen if you haven’t received badges/ribbons
- Publicize council and council activities
- Continue to complete volunteer requirements
- Future Projects
CF Patient Medical Compendium
- Final Comments/Discussion (6:00 – 6:10)
Next meeting September 27, 2016
- Closed Session (6:10 – 6:30)