Wednesday, October 12, 2011

10-19-2011 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 in person 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, October 19th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room


INTRODUCTORY REMARKS
COUNCIL BUSINESS
  1. Discussion: Each council member brainstormed 2 questions to add to Adult CF in-clinic survey for any new versions that may be created in the future (if the first version form is a success). 
  2. Discussion: Each member to brainstorm ideas to encourage adults to show up to adult CF clinic at least quarterly.
    Also, brainstorm how to inform or raise awareness of the choice adult CF patients have to be followed by one doctor (reminder, these requests are made through Kathy).
  3. ACFAC Website: http://cfcenter.stanford.edu/acfac/
    Update: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th). 
    -  
    Parking note and Council template is on our resource page now. Our resource page link: http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html  
    Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
  4. Eric M. will summarize "CFRI LIVE - Successful Transition: Ride With Us" (presented by Kathy Gesley). Transition is a topic that commonly comes up when our representative (currently Chairperson, Kriss) meets with the pediatric council. The CFRI presentation is recorded here: http://www.ustream.tv/recorded/17823167
  5. From the Pediatric council meeting in September: Is there enough priority on adult content on CF center site? http://cfcenter.stanford.edu/
  6. WebEx meeting video and voice recording links removed from online meeting blog. Our council secretary will always have a file with links to our recordings.
    Are these recordings searchable or discoverable?
    Should they be password protected? 
  7. Reminder that a conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election is planned for our November council meeting. Officers please think about if you want to ask to remain in your position. Members please give real thought to if you want to consider an officer position and any questions you might have about each position.
  8. Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action to close our meeting 
  9. Set date/time for next meeting – November 16th, Wednesday at 5pm


___________________________________
To attend this meeting via WebEx: 
Meeting Number: 808 133 886 
Meeting Password: october 

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To join the online meeting (Now from mobile devices!) 
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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=162586897&UID=1219067192&PW=NOWQwZDcyY2I0&RT=MiM0 
2. If requested, enter your name and email address. 
3. If a password is required, enter the meeting password: october 
4. Click "Join". 

To view in other time zones or languages, please click the link: 
https://stanfordmed.webex.com/stanfordmed/j.php?ED=162586897&UID=1219067192&PW=NOWQwZDcyY2I0&ORT=MiM0 

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To join the audio conference only 
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To receive a call back, provide your phone number when you join the meeting, or call the number below and enter the access code. 
Call-in toll-free number (US/Canada): 1-877-668-4493 

Access code:808 133 886

    Saturday, October 8, 2011

    9-21-2011 Minutes

    9-21-2011 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 9/21/2011


    Present:


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


    Guests: Zoe Davies, Arthur Yang, Renetta Robinson, Jocelyn Villaruz, Dr. Paul Mohabir


    Absent: Caleigh Haber, Lizeth Haber, Dave Cartnal


    Introductory Remarks:


    • All council members introduced themselves for the benefit of those using remote attendance methods.

    • Guests introduced themselves.

    • Minutes from the previous meeting were approved.


    Council Business:


    1. Jocelyn Villaruz, the new Chest Clinic Manager was introduced. Her contact info follows:


    300 Pasteur Dr., Room A100

    Stanford, CA 94305

    t: (650) 725-6412

    c: (650) 888-3161

    jvillaruz@stanfordmed.org



      1. The recording of our meetings was discussed at length, voted and passed that the recording will no longer be attatched to the ACFAC minutes.

      2. A Stanford CF adult newsletter was proposed. The council talked about this, Laura Steuer has volunteered to write a column for the next newsletter when the time comes. The council likes the idea of having a column and reaching out to the CF community.

      3. Our quarterly meeting with Dr. Weill and Dr. Mohabir was discussed at length and ultimately decided that these meetings should be as needed rather than quarterly, less informal.

      4. Laura Steuer presented her findings on physician variability vs. individual doctoring. I will attach her findings. In the long run, her results concluded that it didn't really matter between physician variability vs. individual doctoring. However, it did bring up new questions.

      5. ACFAC Website: http://cfcenter.stanford.edu/acfac/
        -  
        Reminder to all: any files sent between council members must include filename and date footnote. See template (download only): https://docs.google.com/leaf?id=0B7WrtjnOi5wMYjE4YzAwMDYtNjk3My00Y2JhLTk4YWUtY2ZkZjYyYThjZTVm&hl=en_US
        - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
        - Kriss owes changes to: Help Us, Help You (port needle size plus month/year placed)
        - Laura: bylaw file (66% noted as attending at least 8 of the 12 meetings per year and election timing changed to January of each year).

      6. FYI: Cystic Fibrosis Caregivers Support Group is now fee free (donation requested)
        Tuesdays, starting July 5th 2011; 6:00 to 7:30pm

      7. The next council meeting has been scheduled for Wednesday October 19, 5-7pm.

        Closed Session:

    1. The council voted upon if we should enforce the attendance requirement wether or not it was an excused absence or not. After much discussion the council voted to enforce this.

    2. The council also talked about a new membership application that was received. The council discussed this breifly, voted and has decided to bring on a new member.