ACFPFAC April Meeting Agenda

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. 

Agenda 

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

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

1. Chair Nominations/Discussions
   Brian will continue on until a new nominee is identified
2. Project Update (5:15 – 5:50)
1. Transplant Education – Larissa 
2. Informational Sheet on Masks – Larissa
   Larissa will update and share latest version  
3. CF Encounters – Larissa/Abby
   Abby to check with Larissa on participating in project
4. Proposed Rewording of Mission Statement/Name change – Jay
   Implementation update
5. RPQ/MyHealth update – Jay
   Continues to support.
6. File Management Approach – Jay
   DropBox has been evaluated, recommended to link to Council Web Page, Jay to continue evaluation, also to include OneDrive.
7. 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.
8. Coordination with CFF and external clinic development – Shawn
   One project approved, Shawn to continue support
9. Clinic-Patient Opportunities – Angel/Elika
   Update
3. Reminders 
1. Publicize council and council activities 
2. Continue to complete volunteer requirements 
3. Future Projects

Hospital RPQ/Inpatient Preparedness

CF Patient Medical Compendium

Top requests for clinic – improvement areas or informational needs

1. Final Comments/Discussion (6:00 – 6:10) 
   Next meeting May 23, 2017
2. Closed Session (6:10 – 6:30)