Tuesday, August 9, 2011

July 2011 Minutes

7-20-2011 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 mrs.harrington@sbcglobal.net (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 7/20/2011


Council Members: Colleen Dunn, Ann Robinson, Erika Harrington, Kriss Benson, Jay Archibald, Dave Cartnal, Ed Kinney, Jackie Rotier, Lizeth Haber, Elyse Elconin-Goldberg.

Guests: Arthur Yang, Anna Modlin, Nerissa Del Rosario, Charlene Kell.

Absent: Caleigh Haber, Laura Caltron, Laura Steuer

Introductory Remarks:

  • All council members introduced themselves for the benefit of those using remote attendance methods.
  • Guests introduced themselves.
  • Minutes from the previous meeting were approved. (Elyse Elconin-Goldberg was at our meeting in June).

Council Business:
  1. Distribution of Hospital form "Help us, Help you"
    Nerissa Del Rosarion (Interim Patient Care Manager for B3/C3) asked a few nurses of their opinion and they would like to add to the list of questions the needle size of any port you may have as well as the month and year it was placed if possible. The council will revise the questionnaire to add these questions.
  2. The yearly Election of ACFAC Officers is scheduled for September in our bylaws (page 3).
    Colleen, Erika, and Kriss were elected December 15th, 2010. Laura was elected May 18th, 2011. The council discussed and voted that we should change the yearly election of officers in January and will be shown in the bylaws.
  3. The bylaws were discussed to reflect the change in attendance. An additional item was mentioned to go with the 66% attendance requirement. That was to note exactly how many meetings that would be (8 meetings/year). The council voted and passed these additions. Jay will post the revised bylaws onto our website.
  4. Zoe Davies wrote and requested updates (one short paragraph maximum) from the adult and pediatric advisory boards for the CF newsletter:

    How about something like this for our ACFAC?

In the Adult CF Advisory Council's (ACFAC) first years, they've successfully encouraged the new Adult CF Center to start an Adult CF Support Group and created forms to give patients tools to communicate their medical routine and wishes to the CF team. The ACFAC asks that adult CF patients and their families contact the council and make use of this unique resource and avenue for direct communication.
How to Contact the Stanford Adult CF Advisory Council:
Website: http://cfcenter.stanford.edu/acfac/
Email: stanfordcfac@gmail.com
Phone: (650) 549-5102 
This paragraph was discussed at length. The council agreed that we would like to see our logo with this paragraph. The council also wanted to make a few changes to the paragraph to make is a bit more open to guests. The council voted and decided that whatever Kriss came up with would be fine.
5. Our August 2011 ACFAC Current Member list (13 members total):
Note: A quorum is defined as 50% + 1 voting members. We have 12 voting members. So, at each meeting, we need at least 7 voting members present.
Kriss (Chairperson)
Laura (Vice Chairperson)
Colleen (Membership Chairperson)
Erika (Secretary)
Lizeth (non-voting member)
  1. Advising the CF Clinic
Due to Laura's absence Erika was asked to give an update on Laura's research addressing physician variability vs. individual doctoring. To sum it all up she is making lots of progress and is looking forward to some of the results.

    1. An update on the progress of the CF feedback questionnaire at the clinic is that it will be launched August 1st.
    2. The bio staff/doctor questions were talked about and some changes were made and voted upon. The council also agreed that there should be a brief introduction on the questionnaire as well. It was voted upon that Dave will come up with a short little blurb.
    3. Current changes, including new member bios, should be up on the ACFAC Website soon.
    4. Our quarterly meeting with Dr. Weill and Dr. Mohabir is coming up. Jay and Kriss will be attending this meeting.
    5. The council briefly discussed the option of having the month of August off. This was voted upon and approved.
    6. FYI: New Cystic Fibrosis Caregivers Support Group
      Tuesdays, started July 5, 2011; 6:00 to 7:30pm

13. Next meeting is scheduled for *September 21, 2011; 5-7pm.*