Friday, July 22, 2016

July Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, July 26, 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.


1.    Introduction (5:00 – 5:10)
2.    Adopt June minutes (5:10)
Please review Angel’s minutes on the blog or via her email previously sent to you
3.    Thanks Ed!
4.    Council Officers – Congratulations!
a.    Vice-Chair – Angel
b.    Secretary – Linda
5.    Proposed Rewording of Mission Statement/Name change – Jay
6.    Project Update (5:15 – 5:50)
a.    Patient Survey – Brian
Check with Joan on survey tools
b.    Virtual Clinic Proposal/Online Collaboration – Brian
Update on meeting Friday, update Larissa
c.    CF Encounters – Larissa
Larissa coming up to speed
d.    Informational Sheet on Masks Larissa
Larissa coming up to speed
e.    Inpatient Issue Management Decision Tree – Angel/Monica/Jay/Elika
Still waiting for clinic input, other comments being incorporated.
f.     Passport (card used for CF advocacy for other ER visits) URLs Angel/Linda
Waiting for response from clinic; Suggestion - Passes for food while inpatient possible solution/format for Passport
g.    Coordination with CFF and external clinic development – Shawn
h.    RPQ/MyHealth update – Jay
Action Items :
Jay to contact Joan for Christian replacement
i.      Clinic-Patient Opportunities – Angel/Monica/Elika
Action Items :
Find baseline determination approach, list to be reviewed and documented for future use.
7.    Action Items (5:50 – 6:00)
a.    Joan – update on file storage recommendation
b.    Colleen – Check with Colleen if you haven’t received badges/ribbons
8.    Reminders
a.    Publicize council and council activities
b.    Continue to complete volunteer requirements
c.    Future Projects
Hospital RPQ
CF Patient Medical Compendium
9.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting August 23, 2016
10. Closed Session (6:10 – 6:30)

Administrator invites you to this meeting.

CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm
Occurs the fourth Tuesday of every month effective Jan 26, 2016 until Jan 31, 2017.
4:45 PM | 2 hr 15 min
(UTC-08:00) Pacific Time (US & Canada)

This invitation is for the CF Adult Advisory Council Meeting taking place the fourth Tuesday of each month starting at 5 pm Pacific

Meeting Begins at 5:00 pm
WebEx and TelePresence Connections Open at 4:45 pm

• Telepresence attendees please press the join button on your touch screen to connect.
• WebEx attendees please click the green "Join Using WebEx' tab within this invite.
• Next join the WebEx audio bridge by phone. Do not use computer audio.
• Please mute your phone until you are ready to speak
• WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list.

Questions call:
Kevin Hurley
Unified Communications Specialist
Stanford Health Care
Mobile: 650-272-7579

Unified Communications Team: 650-721-2800
Meeting password: w1084
Meeting number: 801090638

Join Using Telepresence
Video address:
TP-900 Blake Wilbur-Tumor Board W1084

Audio Connection
Call-in numbers
Toll: 1-650-479-3208
Toll-free: 1-877-668-4493
Access code: 801090638

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