January_2015 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, January 21, 5:00pm-6:00pm
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, 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.

Agenda

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

2. 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.

3. Council Website

                                                    i.     Input for potential improvements

5. 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
6. Reminders
1. Post the agenda to the CF Patient Facebook Page
2. Publicize Council and council activities – all
7. 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 • 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. • WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list. Questions call: Tom Metz Unified Communications 650 492 3675 Join Using WebEx Meeting password: a1830 Meeting number: 803181709 Join Using Telepresence Video address: 7527500@stanfordmed.org Locations: 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: 803181709 Global call-in numbers Toll-free calling restrictions

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