Friday, February 4, 2011

1-19-2011 Minutes

1-19-2011 Minutes

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. If you would like to attend via teleconferencing, please contact Erika Harrington (the current Advisory Council secretary). She will let you know how you can participate.  (Web conferencing/Skype not yet available.)

CF Advisory Council Meeting Minutes 1/19/2011


Council Member: Norma, Lindsey, Colleen, Ann, Eric
Via WebEx or teleconference: Kriss, Erika, Lori, Ed, Lizeth, Caleigh
Guests: Lauren, Jay, Andrew

Introductory Remarks:

  1. All council members introduced themselves for the benefit of those using remote attendance methods.
  2. Guests also introduced themselves.
  3. Quick Cross Infection Control Reminder given by Colleen.
  4. Minutes from previous meeting approved.

Old Business:
  1. The review of the responsibilities of each office will be reviewed at the end of each meeting by Norma
  2. Adult CFAC Group Identity:
    b: A Google voice phone # has been approved by the Council and is (650) 549-5102.
    c: An e-mail address for the ACFAC has been created and approved by the Council. The e-mail is:
    d: The meeting blog is well liked by Council member and is approved.
    e: The presence of a Facebook page for the ACFAC has been approved by the ACFAC, however, Eric needs to look into any possible HIPPA violations this may cause.
  3. A business card from the ACFAC has been approved by the Council and will contain our new logo that has been approved and will list our contact phone # as well as website. They will be available @ the Adult CF Clinic as well as through Colleen.
  4. The distribution of inpatient and clinic "We Want to Hear Your Voice" fliers is in the works of getting printed. They should begin to get passed out to patients starting the week of January 25 according to Rudy.
  5. The ACFAC will have their own link on the CF Center Website. Norma brought up the idea to also include helpful links on our website. We will discuss helpful link ideas at our next meeting. Also, those members of the ACFAC, if you have not sent in your bio for our website please send as soon as possible to Kriss.
  6. The update on hospital form "Help Us, Help You" is on hold until the next meeting.
  7. The Bio staff/doctor questions have been narrowed down thanks to Kriss, Lori, Erika, Ed, and Norma. However, it has come to the councils attention that we should be directing these questions to not only doctors but to other staff members that come into contact with CF patients. The council have also decided that some questions overlap with those on the Stanford Hospital and Clinics website, therefore, Kriss, Lori, Erika, Ed and Norma are going to go through the original list of questions and come to a more appropriate list of questions.
  8. The council decided it would be best to create New Council Member Folder.

New Business:

  1. The questions that were passed around to the ACFAC from Dr. Weill via Lori and Kriss were discussed. The answers we got from these questions were of mixed feelings. Lori and Kriss have a meeting scheduled with Dr. Weill to discuss the feedback they received.
  2. It is still approved by the ACFAC that the attendance shall remain at 80% or 10 meetings/year.
  3. Collen brought up the fact that the members of the ACFAC should start the next meeting promptly at 5pm to discuss new memberships and vote on them so those having to leave early will still have a chance to vote while non-members and guests should arrive @ 5:30pm.
  4. WebEx is having some technical difficulties and Eric will look into it.
  5. The next meeting has been scheduled for Wednesday February 16th 5-7pm in the Blake Wilbur Conference Room.

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