Tuesday, November 24, 2015

"11-17-2015" Meeting Minutes

Adult Advisory Council Meeting Minutes Nov.17
Members present: Jay, Brian, Angel, Ronni, Erick, Ed, Devin, Colleen and Linda Burks.
Welcome to our new member: Linda Burks. Linda is the mom of a soon to be transitioned Son. Additionally, Linda served on the Pediatric Parent Advisory Council for several years.
The September minutes were unanimously adopted.
Project updates:
1.      Virtual Meeting: we are still interested in being a pilot clinic as soon as Stanford IT is ready.
                        ACTION ITEM: Colleen to provide Erick with the name of our contract in IT.
                        ACTION ITEM: Erick to contact IT for a status updates
2.      CF Encounters: No new” updates
3.      Issue Management Tree:
a.      The new color version of the “out-patient brochures” was circulated prior to the meeting.
ACTION ITEM: Angel to contact Meg for confirm that Meg will distribute this form
ACTION ITEM: Colleen to contact Joan: re: budget to print our new project documents on nice heavy weight paper.
4.      My Health – Jay , no new updates
ACTION ITEM: Jay to contact My Health folks to see if they can get our RPQ form in a PDF format uploaded into the MyHealth site.
5.      Mask Information Sheet: This document is in a brochure draft status now. Still need to have Infection Control department and clinic to sign off.
ACTION ITEM: Devin to ask Clinic about a recommendation for which mask(s) they recommend.  
6.      Clinic Patient Opportunities:  Recent issue that has come to the council’s attention: Some medications are unavailable when patients are admitted (Orakambi, Ivacaftor).
ACTION ITEM: Angel to check with Clinic to determine which meds aren’t available and what the process should be for patients when they bring their own medication from home for use while they are in house.
Last Month’s Action item from October
1.      FaceBook issue: Nothing has happened in 3 months. To be further discussed during tonight’s closed session.
2.      File Storage: Joan has identified a location. Logistics still pending.
            ACTION ITEM: Joan to provide details to council.
3.     Dissemination of our documents (CF stories/CF encounters). It was agreed last month that Joan would be in charge of disseminating our de-identified, instructional CF experiences. Devin should touch base with Joan to be sure this is the best way to get  items out to other CF providers, staff members, other clinics, and departments.
New Thought:
Jay reminded old members about our ACFAC pins that identified council members which could help recruit new members or increase our visibility in clinic.
ACTION ITEM: Jay will look into some new options for pins or badges and will present this information next month.
Please continue to complete your volunteer requirements.

Follow Up on Parking Perk Pilot Program:
ACTION ITEM: Angel to check in with Meg to see how the pilot went, was it well received, shall we pursue it further?


Tuesday, November 10, 2015

November Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, November 17, 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)
Welcome Linda Burks!
2.    Adopt September minutes (5:10)
Please review Angel’s minutes on the blog or via her email previously sent to you
3.    Project Update (5:10 – 5:50)
a.    Virtual Meeting Proposal/Online Collaboration – Erick/Brian
b.    CF Encounters – Lauren/Devin
c.    Informational Sheet on Masks Devin
d.    Infection Control Policy – Shawn/Lauren/Colleen
e.    Issue Management Decision Tree – Angel/Monica/Jay/Elika
f.     Coordination with CFF and external clinic development – Shawn
g.    MyHealth update – Jay
h.    RPQ – Jay
i.      Clinic-Patient Opportunities – Angel/Monica/Elika
4.    Action Items (5:50 – 6:00)
a.    Update on Facebook issue
b.    Joan – update on file storage recommendation
c.    Joan – provide input on how to disseminate information to the unit (Ex: RT, in-patient unit, infusion, etc.) for CF Encounters project
5.    Reminders
a.    Publicize council and council activities
b.    Continue to complete volunteer requirements
c.    Future Projects
CF Patient Medical Compendium
6.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting December 15, 2015
7.    Closed Session (6:10 – 6:30)

Administrator invites you to this meeting.

CF Adult Advisory Council Meeting Third Tuesday at 5:00pm
Occurs the third Tuesday of every month effective Jul 21, 2015 until Aug 17, 2016.
4:55 PM | 2 hr 5 min
(UTC-08:00) Pacific Time (US & Canada)

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

Meeting Begins at 5:00 pm
WebEx and TelePresence Connections Open at 4:50 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.
• 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: a1820
Meeting number: 804383588

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: 804383588