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.