2-16-2011 Agenda

Please print your own copy of the agenda and review the 9 "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 15 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. If you would like to attend via WebEx conferencing, please contact Rosie Flores by email at RFlores@stanfordmed.org  at least 24 hours prior to meeting time.  She will respond with information on how to participate.

The Cystic Fibrosis Adult Patient / Family Advisory Council Agenda

Meeting Date/Time:  Wednesday, February 16^th, 2011 from 5:00 – 7:00 P.M.

Location:  Blake Wilbur Conference Room

CLOSED SESSION (5pm to 5:30pm)
A. Vote to revise bylaws to include all members in Closed Sessions (not just voting members) 

B. Vote on New Member Applications per Colleen's Summary and Recommendations (see Colleen's email: "CF adult council applications")

C. Discuss Member Attendance Policy

• Vote on enforcing 80% Attendance Policy anew in 2011 (starting over in 2011 since 80% attendance re-approved at 1-19-2011 meeting)

• Add "members in attendance" "members not in attendance" section to minutes?

INTRODUCTORY REMARKS (starting 5:30pm)

1.  Introduction of Council Members (if guests are present)

2.  Introduction of Guests (if guests are present)

3.  Cross Infection Control Guidelines Reminder – Colleen
 
4.  Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/02/1-19-2011-minutes.html

OLD BUSINESS

5. Review of the responsibilities of each office (print file, bylaws: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNjFkOWM0ZjYtY2JhYi00NWEyLTg4Y2YtNGQxY2ZlNDNiNmU0&hl=en&authkey=CL3KlYYB ) – Norma

• Discuss voting policy when it comes to CF families
  (If the person with CF is not present, can the family member vote in their absence?)(If a member is absent, can they instruct their vote by proxy to another member?) 

6. Adult CFAC Group identity: Facebook group presence? – Eric

7. Business card (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNWQxMWQ2MzMtN2E0YS00OTRjLWI3YWUtOTE5ZGIyY2YxZGU0&hl=en&authkey=CMb59v0B ) – Kriss 

• vote to approve final business card file.

8.  Update on Distribution of Inpatient and Clinic "We Want to Hear Your Voice" Flyers – Charlene and Rudy

• vote to approve new flyer versions with new logo, email address, and phone number (when current first version print runs out):  (print files: 
  Clinic: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZWVkODUyMTctOTdmNC00YzU5LTk2NTAtY2E4OTQ2Y2FmNjEx&hl=en&authkey=CI2Lmv4N
  Hospital: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMODZlNDRlZDItNzhhOC00OWFmLWE4YjQtZmEwYTZjMDFhMTY5&hl=en&authkey=CKSy7JcH )
• vote to approve new Email version: (print files: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMMjdhYWNkNTktMTk1OC00MmJiLTljMGQtMTM5MTRlYTFiZDMz&hl=en&authkey=CMGP37AB ), for use in response to questions or emails to stanfordCFAC gmail account

9.  Update on Website (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMY2EyZjY0NWUtZjRmZS00YTQxLTkyYjItMGE2MzEzOTlkMzEy&hl=en&authkey=CMii44AJ ) – Kriss / Ann

• Ann has agreed to review website content for consistency and errors 
• vote to approve this website version (with Ann's edits) to go live now (send now "incomplete"? Can be changed, added to, and revised going forward...)

10. Update on Hospital form "Help us, Help you" (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYTcyMmZmMTEtMTkwNi00ZjhkLTkwZjgtODA0YWU3MzU1NzQ5&hl=en&authkey=COTjx74J ) – Kriss 

• envisioned 2 files available: 1 pdf to print out and fill out with pen and paper, 1 Word doc to download and fill out with Word (or other document editing program)

11. Bio staff/doctor questions  – Ed

12. Create "New council member" folder committee

13. Summary of conversation w/ Dr. Weill about patient feedback (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZTFjNzZmYjUtMDFiMy00ZjA0LTkwNjctMmI3ZTAxMGJhYzQ1&hl=en&authkey=COzw_eoJ ) – Kriss / Lori 

• Dr. Weill passed our feedback on to the CF team as a whole and reported "The meeting with the team went well. We all appreciate the feedback. Also, we look forward to great participation in the upcoming Town Hall meeting." 
• Adult Cystic Fibrosis Town Hall Meeting scheduled for:
  The Evening of Monday, March 21st, 2011
  Li Ka Shing Center for Learning and Knowledge
  291 Campus Drive, Room 102
  Masks and Hand Cleaners will be provided

NEW BUSINESS

14. Adult CF Center Return patient form  (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNGYxYTY4YTAtN2U5YS00Y2E2LWFjN2YtODFmMzUxMWQ1OGY5&hl=en&authkey=CNTnjfIK ) – Kriss / Lori 

15. WebEx attendance by default

• Rosie has agreed to have a list of ACFAC members that receive a WebEx invite each month by default (In other words, they do not have to request an invite each month. Instead you would only notify Rosie if you were NOT attending via WebEx). 

Set date/time for next meeting – Wednesday, March 16, 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 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 1/19/2011 Present: Council Member: Norma, Lindsey, Colleen, Ann, Eric Via WebEx or teleconference: Kriss, Erika, Lori, Ed, Lizeth, Caleigh Guests: Lauren, Jay, Andrew Introductory Remarks: All council members introduced themselves for the benefit of those using remote attendance methods. Guests also introduced themselves. Quick Cross Infection Control Reminder given by Colleen. Minutes from previous meeting approved. Old Business: The review of the responsibilities of each office will be reviewed at the end of each meeting by Norma Adult CFAC Group Identity: a: The new revised logo is #2 on the following link: ( https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYjA4NTY1MjgtMDkwYi00YzM1LTkzMDQtZDVhNDk3YTUzNWFj&hl=en&authkey=CLmmjNcG)  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: stanfordcfac@gmail.com 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. 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. 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. 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. The update on hospital form "Help Us, Help You" is on hold until the next meeting. 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. The council decided it would be best to create New Council Member Folder. New Business: 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. It is still approved by the ACFAC that the attendance shall remain at 80% or 10 meetings/year. 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. WebEx is having some technical difficulties and Eric will look into it. The next meeting has been scheduled for Wednesday February 16th 5-7pm in the Blake Wilbur Conference Room.