Monday, November 12, 2012

11-21-2012 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

Date/Time: Wednesday, November 215:00pm-6:00pm  (note adjusted time)
Location: Blake Wilbur Conference Room

Introduction of any guests or others as needed.


1.   Adopt October minutes (5:05 - 5:10)
·        Review minutes at

2.   ACFAC project: “Supporting patients to get to clinic”  (5:10 - 5:45)

a.   Partnership with CF clinic on their goals, fundamental to enhancing Patient/Family Centered Care
  1. Council members present research and findings to date:
·        Laura: transportation for Sacramento/Redding areas
·        Richard: transportation for Monterey area
·        Brian: transportation for Salinas area
·        Jackie: work-related/resource information
·        Ann/Elyse: fundraising plan, tasks, and timeline
  1. Next steps: collecting information; setting deadlines
3.   Quick updates and check-ins (5:45 - 5:50)
·        Peer2Peer: mentor training launch

4.   Action items (5:50-5:55

5.   Date/time for next meeting: Wednesday, December 19, 5:00pm-7:00pm


Topic: CF Mtg - Nov
Date: Wednesday, November 21, 2012
Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 801 641 260
Meeting Password: november

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Sunday, November 4, 2012

10-17-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – October 17th, 2012              


Members Present: Laura, Lauren, Colleen, Richard, Elyse, Ann, Bryan, Jackie


Guests Present:  Eric, Kathy


  1. September minutes approved.
  2. The council held continued discussion regarding council goals and current project, how to support the clinic in meeting the CFF recommendation for at least 4 clinic visits per year.  Laura spoke with Kathy and Dr. Mohabir to narrow the scope of the project.  The following information was derived from her meeting:  The clinic has about 200 adults and approximately 20-25 do not show regularly for appointments.  The geographic areas of most concern are the Sacramento/Redding area and the Monterey/Salinas area.  As described by the clinic, the largest barriers seem to be lack of child care, lack of transportation (financial and mode), work related, and psychosocial. Currently, the CF social worker is able to offer and provide resources, but this is mostly limited to Santa Clara County.
  3. After discussion, the council divided up the barriers and geographical areas to further research for more potential resources.  The goal is to provide a working list of resources for the outlying areas that can be readily accessed by the CF social worker to provide information to those who are identified as having barriers.  Fundraising was also identified as a potential resource, and this topic was also added to the list of research items.  Please see Action Items for the breakdown and the members researching each area.  At the November meeting, members will discuss what has been researched thus far.
  4. In trying to improve the clinic experience, the clinic has the capacity to see 15 patients per day, and on days when there are over 10 patients, a second RT has been added.
  5. The Peer2Peer program is finalizing the method of training for mentors and still looking for more mentors.  Please contact Lauren if interested. 
  6. Next meeting set for November 21st from 5:00pm to 7:00 pm.  While several members will be unavailable as November 22nd is Thanksgiving, it was determined that there should be enough members for a quorum.  If you are unable to attend the November meeting, please let Laura/Lauren know so they can ensure your research topic information is shared at the next meeting. 


Action Items

  1. Laura/Elyse: To discuss Facebook
  2. Laura: To determine if November meeting could be held on the 14th instead of the 21st.  OF NOTE: The room is not available, so the meeting will NOT be changed, it will remain on Nov. 21st as scheduled.
  3. Council Research Topics:
  • Ann/Elyse: Fundraising
  • Laura: Means of Transportation for Sacramento/Redding areas
  • Richard: Means of Transportation for Monterey area
  • Bryan: Means of Transportation for Salinas area
  • Jackie: Work-Related/Resource Information