3-16-2011 Minutes

3-16-2011 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 3/16/2011 Present: Council Members: Norma Kipp, Erika Harrington, Kriss Benson, Ann Robinson, Laura Steuer, Ed Kinney, Jackie Rotier, Lauren Catron, Lori Kipp, Jay Archibald, Elyse Elconin-Goldberg, Caleigh Haber, Lizeth Haber. Guests: Arthur Yang, Charlene Kell, Renetta Roberson, Eric Williams Absent: Dave Cartnal, Colleen Dunn, Lindsey Martins. 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 with the following corrections (these corrections have been made to the February minutes): The council voted in 5 new members: Jackie Rotier, Lauren Catron, Jay Archibald, Elyse Elconin-Goldberg, and Laura Steuer. The council voted to revise the bylaws and include all members in closed sessions. This is revised from including all voting members. The council voted to enforce attendance and include "members in attendance" and "members not in attendance" on all monthly minutes from this point forward. Norma Kipp is not responsible to list council jobs, she has offered to remind us at the end of the meetings of their responsibilities. New Business Council Pace and Work Progress The speed and work progress of the council was discussed. The council decided that we were happy with these items and didn't feel like we needed to slow down. We came to the conclusion that if we do start to move too fast, please feel free to speak up and/or ask for help. Living documents were discussed, voted upon and passed that a revision note needs to be added to all documents. The potential of having a "safe person", someone who does not hold an office, who all members can bring their concerns to that will protect anonymity and work behind the scenes to assist with any council member concerns was voted upon and denied. Many council members felt that we can bring any concerns about the council out and discussed openly. Proposed WebEx etiquette Please refer to the Adult CFAC meeting agenda each month for WebEx log in and pass code instructions (note: the pass code changes each month). Please log in at 4:50pm in order to prepare for our 5:00pm meeting. Please don NOT place your phone on speaker and please do NOT use your computer's built-in microphone and speakers. It is best to use a headset or a phone for your voice. Please have only one person on a phone or computer at a time. Please identify yourself by name when you are speaking. Please let the other members know right away if we (in the room) are not speaking loud or clear enough and vice versa. Although Lindsey Martins was absent at this meeting, the council was still able to discuss this item and these suggestions. Positive remarks were said with these suggestions and the council voted to pass these changes. The council discussed how we can ensure that all members (including WebEx participants) be included and heard during the council meetings. The council has decided that whenever a person speaks they will identify themselves first before they speak. This way those joining the meeting via WebEx or teleconferencing can identify who is talking. It was also discussed at the meeting that on WebEx the agenda won't show during the meeting to the image of the conference room attendees and those on WebEx will have a larger picture. At this time it was agreed upon that Erika Harrington (Adult CFAC secretary) will call each vote since she is already in charge of attendance. Old Business The Adult CFAC Group having a Facebook presence was discussed. What the council was told is that should we have a Facebook identity we would have to update our Facebook page several times per week and therefore weren't sure if we wanted to currently take on this responsibility. Some concerns were also brought up about having a Facebook presence. The concerns were that many people on Facebook tend to vent and therefore may go the wrong way along with the possibility of negative and inappropriate things being said. The council voted on this item and has decided to place our Facebook page on hold for now. The Stanford media representative can offer us more info on a Facebook presence once we decide to have the council join Facebook. To add to getting the word out about our council, a parent at St. Joe's Children Hospital in Paterson, NJ has asked for advice creating they're own CF Advisory Council. They had found our council through the Stanford Advisory Council website. The council discussed the best way to help them out and was decided upon that Kriss Benson will send Norma Kipp's e-mail address to the contact in Paterson, NJ and that Kriss will put them in touch with Stanford's Pediatric CFAC. The councils business card was talked about and a suggestion for a slight design change was decided upon and Kriss Benson will make the correction. The section where we can write our name on the card will be removed and we can just write our name on the back of the card. We also decided to print our own cards in order to not spread germs. An update on the distribution of inpatient and clinic flyers "We Want to Hear Your Voice" from the clinic side is that the flyers are in the clinic located at the check in desk. Any filled out flyers will be collected and brought to our meetings either by Charlene Kell or Renetta Roberson. From the inpatient side of things Rudy Arthofer was not present at this meeting, however, Lori Kipp had spoken to earlier and was told that the flyers are being passed out, only in Unit C, and that there have been no responses yet. An update on the hospital form " Help Us, Help You" was unavailable due to Rudy Arthofer's absence. Eric Williams will discuss with Rudy some distribution types for this form. The topic of having a council sign up sheet at the CF clinc's front desk was brought up and according to Eric Williams there are some HIPPA laws that this may interfere with. Eric Williams will look into it more and get back to the council. Some written concerns regarding MyHealth were brought up to Charlene Kell. Many CF patients have noticed that the CF Clinic doesn't show up on MyHealth. She will look into the issue. For our ACFAC website Lori Kipp has volunteered to become the website revision manager. The council voted that the website revision manager and/or council can make changes as long as it is brought up to the council and approved. At this meeting the council decided not to have pictures of ourselves located on the ACFAC website. It was also confirmed by Kriss Benson that our website is read only. Some ideas for change were brought up about the return patient clinic form. Kriss Benson will add integrative medicine or alternative medications to the form. A hold on this form was voted and passed once this addition is made. According to Kriss Benson, Kathy Gesley and Dr. Weill of the CF Clinic are interested in sending this form to CF patients before their appointment in clinic via e-mail or postal service. So far, positive remarks have been made about this form both through CF clinic staff and CF patients. A vote for a revision of the council's tri-fold brochure was brought up and after much thought and discussion the vote was to get rid of the brochure instead of just a revision of it. Get the word out: Town Hall date has changed: Adult Cystic Fibrosis Town Hall Meeting Wednesday, March 23rd, 2011, 6 to 7:15pm Li Ka Shing Center for Learning and Knowledge 291 Campus Drive *Masks and hand cleaner will be provided. WebEx will be available. The CF Adult Support Group has WebEx. Please see http://cfcenter.stanford.edu/ at the lower left corner of the page section "CF SUPPORT GROUP" for Web Ex directions each month. A few items that were on the agenda for this meeting were not discussed due to time constraints and will be discussed next time. The items that were not discussed are: Bio Staff/Doctor questions "New council member" folder, package, or page Create a council resource page Review bylaw revisions Our next council meeting is scheduled for Wednesday, April 20, 2011, 5 to 7pm.