September Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council 

Date/Time: Tuesday, September 27, 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. 

Agenda 

1. Introduction (5:00 – 5:10) 
2. Adopt July minutes (5:10) 

Please review Linda’s minutes on the blog or via her email previously sent to you 

1. Project Update (5:15 – 5:50)
1. Proposed Rewording of Mission Statement/Name change – Jay
   Implementation update
2. Patient Survey – Brian
   Brian will get an account at SurveyMonkey to evaluate its usage.
3. Virtual Clinic Proposal/Online Collaboration – Brian
   Incorporate input to final overview document.  Will be shared with CFRI and CFF (Shawn) to get input and potential support.  Larissa to contact hardware vendor, Brian to provide contact.
4. CF Encounters – Larissa
   Larissa to contact Devin to come up to speed.
5. Informational Sheet on Masks – Larissa
   Has questions for clinic, should be captured this Thursday.  Expand to two deliverables – one the brochure, the second a more detailed presentation that can be used for quarterlies.  Proposal will be posted.
6. Inpatient Issue Management Decision Tree – Angel/Jay/Elika
   Next council meeting is deadline before final publish.  Recommendation to contact Meg and ensure that any information share with her is understood to be confidential. 
7. Passport (card used for CF advocacy for other ER visits) URLs – Angel/Linda
   Logo updated, positive feedback from Meg, no other input received. Deadline will be next council meeting similar to Inpatient brochure.
8. Coordination with CFF and external clinic development – Shawn
9. 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.
10. File Management Approach – Jay
    DropBox has a potential solution for file management, will investigate further with assistance from Ed.
11. Clinic-Patient Opportunities – Angel/Elika
    New request, find out the concerns by the clinic relative to honoring patient requests for providers to wear masks.  Will continue to try and push the clinic to support when requested.
2. Action Items (5:50 – 6:00) 
1. Colleen – Check with Colleen if you haven’t received badges/ribbons
3. Reminders 
1. Publicize council and council activities 
2. Continue to complete volunteer requirements 
3. Future Projects
   Hospital RPQ 

CF Patient Medical Compendium

1. Final Comments/Discussion (6:00 – 6:10) 
   Next meeting October 25, 2016
2. Closed Session (6:10 – 6:30)