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

INTRODUCTORY REMARKS

• A Brief Word from Dr. Weill 
• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
  - Noted Guest: Sheena from the CF Foundation
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/05/4-20-2011-minutes.html

NEW BUSINESS 

1. Quarterly meeting with Dr. Weill summary - Kriss (Erika)
    a. summary document here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNmZiM2FjNDgtNDNhYy00ZmI1LWE0ZDctZTQ2OTQ1ZWM1YjJk&hl=en&authkey=CIOFre0J
   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: http://cfcenter.stanford.edu/acfac/council-projects.html
   - special thanks to founding members
3. Pediatric advisory meeting summary – Kriss
   - their new website: http://cfcenter.stanford.edu/pediatric-advisory-board/
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

OLD BUSINESS

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: http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html
   - 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: 
   https://docs.google.com/leaf?id=0B7WrtjnOi5wMNzQ0OGZiNTUtMWZjYS00ZTY1LTk1OTQtNTBkMmNkYTU1NDBj&hl=en&authkey=CLyUt58G
6. ACFAC Website up: http://cfcenter.stanford.edu/acfac/
    - 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): http://cfcenter.stanford.edu/acfac/links.html
   - 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 https://stanford.webex.com/stanford/j.php?ED=10409933&UID=30808823&PW=NNzgzMWFjZWRm&RT=MiM0
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.

4-20-2011 Minutes

4-20-2011 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 4/20/2011 Present: Council Members: Norma Kipp, Erika Harrington, Kriss Benson, Ann Robinson, Jackie Rotier, Lauren Catron, Jay Archibald, Lindsey Martins, Colleen Dunn, Elyse Elconin-Goldberg, Dave Cartnal. Guests: Zoe Davies, Meg Devorak, Rosie Flores, Bill Kipp, Dr. Paul Mohabir, Kim Schlotterbeck, Sarah Della Maggiore, Joan Forte, Charlene Kell, Renetta Roberson Absent: Lizeth Haber, Caleigh Haber, Ed Kinney, Laura Steuer *Note: This month's meeting was not recorded due to technical difficulties. Introductory Remarks: All council members introduced themselves for the benefit of those using remote attendance methods. Guests also introduced themselves. Minutes from previous meeting were approved. New Business: The patient experience at the CF clinic was discussed from those who have be to the clinic within the past month. Positive and productive comments were made about their visit and the return patient form. Renetta brought in the filled out flyers from clinic. No comments were made on these forms. Kriss will get in contact with those who left their contact info. The council asked some of the CF clinic staff how the Return Patient Form was being accepted from their perspective. Positive remarks were made from the staff. The council discussed and came up with several questions and comments that Kriss and Erika will bring up at the ACFAC quarterly meeting with Dr. Weill. They will return to the next council meeting with the results. The council talked about who should attend these quarterly meetings with Dr. Weill. The idea of having another CF clinic staff member attend as well was brought up. After a brief discussion it was voted upon and passed. Some of the council members still thought it was a good idea to ask Dr. Weill what his thoughts were about this. Kriss will send an e-mail to Dr. Weill to get his input. The council brainstormed some ideas to get better communication from the whole Stanford CF Adult population. Sending out another survey to Adult CF patients was brought up to aid in the communication between patients and CF staff as one possible way. Another suggestion was to have "A Picnic in the Park" Day for CF patients only. Due to Laura's absence we were unable to fully go over her findings regarding team doctoring vs. individual doctoring. The US News Report that Erika found online at http://health.usnews.com/best-hospitals/stanford-hospital-and-clinics-6932330/respiratory-disorders was discussed during the meeting. It was brought up that Intensive Care may be included in these results and therefore may not be accurate to the Pulmonary Clinic. Norma Kipp announced her resignation from the ACFAC. A private remembering of Lori Kipp was held from this point until the end of the meeting. The items that were not discussed at this month's meeting will be discussed next time. The next ACFAC meeting has been scheduled for Wednesday, May 18th, 2011.