Monday, January 19, 2015

January_2015 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, January 21, 5:00pm-6:00pm
Location: Blake Wilbur  Room W1084 &
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Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines, which at this time allow only one individual with CF in the meeting room.  This week that person will be Angel.  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 December minutes (5:10)
    1. Please review Angel’s minutes on the blog or via her email previously sent to you
  3. CF Research Update – (5:10 – 5:20) Colleen
  4. PFCC Update (5:20 - 5:30) Joan Scott
  5. CF PAC Project Update – (5:30 – 5:45)
    1. Virtual Meeting Proposal/Online Collaboration
                                                    i.     Coordination with CFF and external clinic development – Shawn
                                                   ii.     MyHealth project status – updates per participants
                                                 iii.     Stanford Facebook meeting volunteers – Monica
    1. Clinic-Patient Opportunities – Monica/Angel/Elika
                                                    i.     List Definition – Status
                                                   ii.     Send committee an updated version of the Patient Questionnaire form after updating it with suggestions from Elika – Jay
                                                 iii.     How about general questions – Minnesota protocol for vest, for example.
    1. Council Website
                                                    i.     Input for potential improvements
  1. Action Items from Previous Meeting (5:45 – 6:00)
    1. Elika: Write up an insert to be published in the next Newsletter regarding the topic of Baseline Determination.
    2. Elika: Email other NP groups who use a Patient Questionnaire from to see what they find useful.
    3. Jay: Email Elika the Return Patient Questionnaire form for suggestions.
    4. Jennifer: Discuss with the New Clinic Manager to see if the ACFAC brochures can be placed at the front desk.
    5. Brian: If you are able to get into contact with the MyHealth Team pass along the email issues Jennifer is having. Also check to see if there is a way Jennifer can use MyHealth to send patients forms like a patient’s assistance program.
    6. Brian: Invite Lauren to Join the Facebook Page and provide her background on current projects being worked on
  2. Reminders
    1. Post the agenda to the CF Patient Facebook Page
    2. Publicize Council and council activities – all
  3. Proposals for New Projects (6:00 – 6:05)
    1. Pending Future Project: Joan and Brian E to contact Christine from MyHealth to see about a possible collaboration between Epic Synopsis and MyHealth

Adjournment - Next meeting Feb. 18, 2015

Administrator invites you to this meeting on behalf of Tom Metz

“CF Adult Advisory Council Meeting” from 5-7p 1/21/15
Wed, Jan 21, 5:00 PM | 2 hr
(UTC-08:00) Pacific Time (US & Canada)

This invite is for the “CF Adult Advisory Council Meeting” from 5-7p
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Questions call:
Tom Metz
Unified Communications
650 492 3675
Meeting password: a1830
Meeting number: 803181709

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