Friday, May 13, 2011

5-18-2011 Agenda

Please print your own copy of the agenda and review the "attachments" to assist in cross-infection control! 

Anyone calling in needs to do so AHEAD of time. We've asked that call-in or WebEx members get set up 10 minutes before the scheduled meeting time. 

Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend if you have an active viral infection or any other contagious condition. If you have CF, keep three feet between yourself and others who have CF. Avoid shaking hands with others. Additionally, individuals with CF who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) or who have cultured Methicillin-resistant Staphylococcus aureus (MRSA) within the past two years, or who are currently culturing a bacterium resistant to all antibiotics (pan resistant) may not attend our sessions in person due to the cross-infection risks to others with CF. Please see the "To attend this meeting via WebEx" section at the bottom of this agenda if you wish to attend this month's meeting via WebEx.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda
Meeting Date/Time: Wednesday, May 18th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

  1. Quarterly meeting with Dr. Weill summary - Kriss (Erika)
     a. summary document here:
    b. Important note from Dr. Weill:
    As a council, we can help get the positive word out about the new adult CF center, and the whole CF medical staff's caring intentions. Probably one of the biggest concerns the team had about our previous feedback was this "fear of retribution". The CF medical team wants our input, values this input, and cares about every patient. As much as possible, they want adult CF patients to know all that, and never fear working together constructively.
     c. Who would like to represent us going forward at these quarterly meetings? vote on how to select 2 council members each quarter
  2. Staying Positive
    Review council projects and CF center response – Kriss (Eric)
    - our projects can be found here to review:
    - special thanks to founding members
  3. Pediatric advisory meeting summary – Kriss
    - their new website:
  4. Advising the CF Clinic
    -  research team doctoring vs. individual doctoring, statistics for patient outcomes – Laura
    - appeal process for CF center patient decisions – Ann
  5. Reaching out to the whole Stanford Adult CF Population
    - CF feedback questionnaire at clinic  – Colleen, Meg, Renetta
    on hold pending Meg's return
    - Event page on Facebook for our ACFAC meetings? – Sydney 
  6. Elect new council Vice-Chairperson

  1. Member anniversary date and Council attendance – Erika, Colleen
  2. Update on approval for council sign up sheet at the CF clinic front desk – Eric
  3. Update on reported MyHealth issues - Charlene, Renetta
     - The CF clinic does not appear as a point of contact at all for some CF patients through MyHealth.  Note: Patients seeing this problem should call: 650-723-3333
     - There is no clear path to communicate with Kathy directly through MyHealth. Note: MyHealth is intended for contact with physicians only. Therefore, there will be no direct path to communicate with Kathy.
  4. New council member "folder" combined with Council resource page? – Ann (Jackie / Kriss)
    - see draft here:
    - Clarify anyone, even with health issues, can attend or be a ACFAC member or guest (just via WebEx)
    - Contact Directory - Erika
        (Kriss still needs to contact interested parties to confirm they
        still want to receive our emails)
  5. Bio staff/doctor questions – Ed (Erika, etc) (review file: 
  6. ACFAC Website up:
     - website revision manager?
    (Kriss is remembering to update all files [including web files] with revision and date note. Plus "alternative therapies" note on return patient form.)

    - last chance this month for new member bios
    - last chance this month for website revisions
  7.  Bylaw revisions are holding for now, who would like to pick these up?
  8. Distribution of Hospital form "Help us, Help you" – Eric (Rudy)
    - posted and available here (2nd bullet):
    - what ideas did the staff come up with to distribute this?
    - note: Kriss still needs to add massage question and form URL note to online form files 
Set date/time for next meeting – Wednesday, June 15th, 2011

To attend this meeting via WebEx:

Meeting Number: 496 452 396
Meeting Password: april

To join the online meeting (now from mobile devices too):
1. Go to
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: may
4. Click "Join".

To join the audio conference only:
To receive a call back, provide your phone number when you join the meeting, or call 1-650-429-3300 and enter the access code: 496 452 396.

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