Thursday, January 22, 2015

"01-21-2015" Minutes

ACFAC Minutes 01-21-2015

Members Present: Brian, Devin, Angel, Colleen, Ed, Annette, Shawn, 

Members Absent: Victoria, Lauren, Monica, Jay

Guest: Karen

Council Votes: December Minutes Approved

Project Updates:

CF Research Update: Colleen updated the council on the new and exciting studies happening at Stanford. There are a fair number of Vertex research trials taking place this year. One of the Phase 3 Vertex studies is following the long-term effects of Ivacaftor and lumacaftor, the VX809 Compound. In addition, they are running a Vertex study looking at the 661 compound and Ivacaftor, which is closed to enrollment.  It was just announced today that Stanford has been chosen to participate in Phase 3 Vertex study looking at Ivacaftor in combination with VX-661. This is good news for patients with mutations other than the F508/F508 mutation. This study will recruit some of the untapped cf population. Just recently the FDA approved Ivacaftor for CF patients with the mutation R117-H. There are also other non-Vertex studies starting up looking at correcting CFTR protein. These are all early phase studies which will be starting up soon. As a reminder: the research team does a database search when a new study is starting, they then find patients that "fit" the protocol defined inclusion and exclusion criteria. Once they've identify potential participants, the research team contacts those who meet criteria. As always you can reach out to Colleen if you have questions or are interested in a study! Colleen's number: 650 736-0388.  To find out more about CF Research Clinic Trails going on and updated information please visit the Stanford CF Clinic website at

Coordination with CFF and external clinic development: After attending the virtual  innovation two day CF Care Model Design meeting, Shawn reported to the council goals and topics that were discussed. The main goal: To Cure CF. There are several groups focusing on individual goals: ways for patients to stay out of the hospital, and making sure patients do not feel alone or helpless. General discussions looked at ways to improve communication between staff and patient  Estimated completion of the project is sometime after September. Shawn will keep the council updated on any new information. If you are interested in finding out more about this project you can check it out on the web at

MyHealth Update: Christian from MyHealth is starting back up in mid-January. No further updates at this time. 

Facebook Meetings: No meetings have taken place at this time. Brian will follow up to see if any meetings will be scheduled in the future. 

Clinic - Patient Opportunities: Elika will write up an insert to be published in the March Newsletter regarding the topic of Baseline Determination. Angel will keep a running list of general questions the council presents during the meetings or topics arising on the facebook page. She will then distribute the question to the appropriate parties and track the completion of questions.  

Return Patient Questionnaire Form: Follow up with Jay at next meeting

Council Website: Follow up with Jay at next month meeting.
Action Item Follow Ups from Previous Meeting:

Elika: Will write up an insert to be published in the March Newsletter regarding the topic of Baseline Determination

Elika: Sent out an email to other NP groups who use The Return Patient Question Form to see what they find useful. Due to the holidays she did not receive any responses back. She will resend and research and report back to the council. 

Jennifer spoke with the CF clinic manager and it is ok to place the councils brochures at the front desk. She is also still waiting on a response back from MyHealth regarding her email issues. 

Brian sent Lauren an invite to the Facebook Page.

Action Item: 

  • Brian: Work with Colleen on creating a profile for the Facebook page.
  • Angel: Inform Colleen of how many cfers will be in the room during a council meeting so she can supply masks, and hand gel. 
  • Colleen: Email Brian or Angel,  Dr. Milla's Vest Cycling Procedure. Post the procedure on the Facebook page. 
  • Angel: Will keep a running list of general questions the council presents during the meetings or topics arising on the facebook page. 
  • Devin: Follow up with Elika about insert in March's Newsletter regarding Baseline Determination, and posted on the Facebook Page. 
  • Brian: Follow up with Joan about attending the next council meeting. 

Meeting called to a close at 6:00pm
Next Council Meeting February 18, 2015

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 &
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.


  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
• 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
Meeting password: a1830
Meeting number: 803181709

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: 803181709
If you need the host key or cannot join the meeting using WebEx from this email message, go here:
Need more details about joining the meeting using telepresence?
Having trouble joining from a telepresence room? Get help.
IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation.