Saturday, October 13, 2012

10-17-2012 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, October 175:00pm-7:00pm
Location: Blake Wilbur Conference Room

Introduction of any guests or others as needed.


1.   Adopt September minutes (5:05-5:10)
-    Review minutes at
2.   ACFAC direction and goals Part IV (5:10 – 6:20)

a.   Followup from September: Our current partner project with the clinic toward their goals, fundamental to enhancing Patient/Family Centered Care:
-        Current goal: “Supporting patients to get to clinic”
-    Scope of project, challenges, and possible solutions. Presentation notes at

  1. Action plan: Council members to do the following:
-         Discuss and choose tasks to complete project
-         Assign members to various tasks
-         Create general timeline/deadlines and feedback mechanism

3.   Clinic operations (6:20 – 6:22)

4.   Peer2Peer Program (6:25 – 6:30)

5.   Quick updates and check-ins (6:30 - 6:40)

7.   Action items (6:40-6:50

8.   Set date/time for next meeting: Wednesday, November 21, 5:00pm-7:00pm


Topic: CF Mtg - Oct
Date: Wednesday, October 17, 2012
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00)
Meeting Number: 800 334 669
Meeting Password: october

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Sunday, October 7, 2012

9-17-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – September 17th, 2012         


Members Present: Laura, Lauren, Colleen, Ed, Richard, Elyse, Ann, Jackie, Jay


Guests Present:  Eric, Kathy, Renetta, Dr. Mohabir


  1. July minutes approved.
  2. Discussion held regarding goals / direction of the council and how to align these with the goals of the clinic. Kathy discussed the clinic goals that have already been achieved including the expanded clinic slots we have now, increased spirometry and social services support, ability to have appointment with same physician, and the endocrinology co-clinic monthly. 
  3. Kathy also discussed clinic goals going forward, and identified several areas for the council to assist.  These are: 1. Improving clinic attendance to the CFF standards (4 visits/year), 2. Improving support for newly diagnosed adult patients, including funding to be able to provide written resources, 3. Addressing need for support/education for the growing number of CF patients diagnosed with diabetes, 4. Getting CF to "fit into life", and 5. Difficulties with insurance, especially for those who are newly diagnosed. The council discussed each item in depth and decided to address the first item, improving clinic attendance.  Laura to meet with Kathy to develop an action plan and get specifics regarding the issue.
  4. The Peer2Peer Program continues to move forward.  Mentor training id being finalized and will begin in November.  Logistics for those with cross-infection precautions are being addressed.  The program is still looking for 2 more mentors, please notify Lauren in interested.
  5. Lauren was nominated and voted on as the new Vice Chairperson.
  6. Jay is working on the updates for the member changes on the ACFAC membership page.
  7. Reminders to continue to check the CF Center's Facebook Page for council updates, a link to the page to be emailed to council members for easier access.
  8. Laura did a CFRI Discovery Series presentation regarding parenting a CF and short discussion held that most of the literature addressed pregnancy and therefore women, but not parenting in general.  For more information, feel free to contact Laura.
  9. Colleen has 2 possible candidates interested in council membership.  She will send the applications via email when available and the council will plan to vote via email.
  10. The old outdated council brochures have been removed.
  11. Next meeting set for Wednesday, October 17th, 5pm-7pm.

Action Item:


  1. Laura to meet with Kathy regarding action plan for improving clinic attendance