Sunday, June 5, 2011

5-18-2011 Minutes

5-18-2011 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 (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 5/18/2011

Council Members: Ed Kinney, Erika Harrington, Kriss Benson, Ann Robinson, Jackie Rotier, Lauren Catron, Jay Archibald, Lindsey Martins, Colleen Dunn, Elyse Elconin-Goldberg, Dave Cartnal, Laura Steuer.

Guests: Zoe Davies, Rosie Flores, Dr. David Weill, Arthur Yang, Rudy Arthofer, Sydney Altano, Sheena Stuart, Charlene Kell, Renetta Roberson, Eric Williams.

Lizeth Haber, Caleigh Haber

Introductory Remarks:
  1. All council members introduced themselves for the benefit of those using remote attendance methods.
  2. Guests also introduced themselves.
    Sheena Stewart the Director of Development at the Cystic Fibrosis Foundation Northern California - South Bay introduced herself and made a brief statement as to what the CFF does locally.
  3. Minutes from previous meeting were approved.
  4. A Brief word from Dr. Weill:
    Dr. Weill, along with the rest of the CF team, thought there was a lot of criticism towards the CF team and Transplant team after Lori Kipp's passing. The CF team was quite angry with negative behaviors towards them. There are several ways to get patient concerns to the CF team. If you would like a second opinion, don't hesitate to ask. Kathy Gessley is the best person to talk to about this subject. The CF team is accustomed to hearing their patients ask for a second opinion, it's a part of working in the medical industry.

New Business:
  1. The topic of attending physicians came up should you be admitted. Recommendations were made by both council members and Stanford staff.
  2. 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.
    The topic of who would like to go to these quarterly meetings was discussed and decided upon that a CF council member should be attending these as a priority. The current ACFAC chairperson will always attend and the second person will be based upon volunteering and ultimately up to the chairperson.
  3. Staying positive:
    The council discussed how we need to stay positive about all of its accomplishments. Our projects can be found here to review: In addition, CF patients do have the opportunity to see only one doctor. Also, the CF team is working with the ACFAC and progress is being made.
    The ACFAC made a special thanks to those founding members.
  4. The Pediatric Advisory Council has a new website: . They would also like to make it clear that they are against physician variability.
  5. Advising the CF Clinic:
    The topic of physician variability vs. individual doctoring was discussed at length. Laura Steuer found out that with other health issues, if you see one doctor vs. a variety, compliance goes up. She is unsure if that's the same with CF patients. The council voted that Laura should research this topic more and get back to the council. Due to Dave Cartnal's employment he has some information on this topic that he will pass along to Laura.
    The appeal process for the CF clinic was brought up and discussed. If you ever want a second opinion please feel free to do so. The best person to contact is Kathy Gessley. It was brought up that nurses are an excellent advocate for their patients along with their social worker.
  6. Reaching out to the whole Stanford Adult CF Population:
    Meg Dvorak will send Dr. Weill the CF questionnaire form once she returns from vacation.
    Having a Facebook presence for ACFAC events was brought up and discussed. Once again the council thought this would NOT be a wise idea due to negative remarks on Facebook. The council would like to see however that the next Town Hall Meeting be advertised better.
  7. Laura Steuer volunteered for the Vice Chairperson position. The council voted and approved of this.
Old Business:
  1. Member Anniversary Date:
    The anniversary date for each ACFAC member was brought up so that when their 2 year term is up the council is aware and if that member would like to continue for another term the council discussed and voted that a simple majority from the ACFAC is sufficient enough to reinstate that member. All members will send their anniversary date to Erika Harrington, the ACAFC secretary. Also, the council voted upon and passed that the absentee year will begin at the start beginning of each calendar year.
  2. Update on approval for council sign up sheet at the CF Clinic's front desk:
    Eric Williams needs to know that any patient information the council receives is located in a secure location. Kriss Benson confirmed that it is in a safe location and will send Eric this information.
  3. Update on MyHealth issues:
    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 Gessley directly through MyHealth. Note: MyHealth is intended for contact with physicians only. Therefore, there will be no direct path to communicate with Kathy.
  4. The new council member "folder" has been combined with the council resource page and can be found here:
    The council would like to make it clear that everyone is welcome to our meetings. If you cannot make it in person you can also join by calling in or using WebEx.
    The ACFAC contact list is currently getting updated by Erika Harrington. Kriss Benson still needs to contact interested parties to confirm they still want to receive our emails.
  5. Bio staff/doctor questions:
    Ed and the rest of this committee will be revising the list that they have come up with and will present this new list at the next meeting.
  6. Jay Archibald volunteered and was voted in by council to be the new Website Revision Manager. Kriss Benson will update Jay on this position.
  7. Bylaw revisions are holding for now and Laura Steuer will update any changes that will be necessary.
  8. Distribution of Hospital form "Help us, Help you":
    Eric Williams will get together with Rudy Arthofer and figure out the best way to distribute this flier. Some council members thought that have a CF corner in the clinic would be a great place to advertise this flier along with ACFAC business cards, CF clinic business cards and other important CF information.
  9. The next meeting is scheduled for Wednesday, June 15, 2011.

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