Wednesday, April 13, 2011

4-20-2011 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, April 20th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

  1.  Patient experience at clinic - Anyone (who has been to clinic in last month)
     - discuss new patient form, and how new changes are going for patients
     - "We Want to Hear Your Voice" clinic flyer feedback response sheets - Renetta
  2. Quarterly meeting due with Dr. Weill (due end of April) - Kriss (Erika)
    a. Request information from Dr. Weill:
     -  how is the return patient form going from a staff perspective?
    b. Relay information to Dr. Weill:
    -  contacted by other advisory council in NJ, impacting more than just Stanford CF patients
    - ALL Brainstorm for April ACFAC meeting: list of 10 things we want to relay to Dr. Weill
     c. Who would like to represent us going forward at these quarterly meetings?
  3. Advising the CF Clinic
    -  brainstorm ideas for getting better communication from the whole Stanford CF Adult population (more than just the same 10% as discussed at Town Hall)
    -  research team doctoring vs. individual doctoring, statistics for patient outcomes - Laura
    -  US News Report - Erika
  4. Remembering Lori Kipp:
    from Dave -
  5. Member anniversary date - Erika

  1. 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?
  2. Council sign up sheet at the CF clinic front desk – Eric
  3. Update on MyHealth issues - Charlene, Renetta
    - The CF clinic does not appear as a point of contact at all for some CF patients through MyHealth.
    - There is no clear path to communicate with Kathy directly through MyHealth. 
  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. Review council projects and CF center response – Kriss (Eric)
    - our projects can be found here to review:
    - special thanks to founding members 
  7. ACFAC Website up:
    - website revision manager Kriss for now, ok? (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
  8.  Bylaw revisions are holding for now
Set date/time for next meeting – Wednesday, May 18th, 2011

To attend this meeting via WebEx:

Meeting Number: 495 747 888
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: april
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: 495 747 888.

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