Monday, March 19, 2012

3-21-2012 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, March 21, 2012
Location: Blake Wilbur Conference Room

Introduction of any guests or others as needed.

1.   Council chairperson ()
b.   Laura's CF Ed Day quiz: answers given and prizes awarded.

2.   CF mentor questionnaire ()
Lauren and Joan (Joan Forte, Director of Patient Care Services) to present roll-out of CF Mentor/Peer-to-Peer program:
- Partnership with hospital and other clinics
- Mentor training, supervision, tracking
(Laura says: you will not want to miss this meeting, this is gonna be amazing!)

3.   "We want to hear your voice" council flyer (
Ed to report finalized process for getting the flyer to inpatients; see flyer (one version only, now) at Kriss to report about flyer on website.

4.   Clinic/patient communication (6:05-6:20)
      Laura to address last month's presentation by Kathy and clinic staff regarding followup paperwork and in writing; our council's role and responsibilities.

5.   Quick updates and check-ins (6:20-6:35)
      - Laura to report on CORE PAC meeting
      - Get to Know Team questionnaires: status update
      - Clarify CF adult tab ( v. ACFAC tab(

6.   Council concerns and open discussion period (

7.   Action items:
Kriss to read.

8.   Set date/time for next meeting: Wednesday, April 18,


WebEx info:  

Topic: CF Mtg-March
Date: Wednesday, March 21, 2012
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00)
Meeting Number: 809 318 427
Meeting Password: march

To join the online meeting (Now from mobile devices!)
1. Go to
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: march
4. Click "Join".

To view in other time zones or languages, please click the link:

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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.
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Call-in toll number (US/Canada): +1-408-600-3600
Global call-in numbers:
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Access code:809 318 427

For assistance
1. Go to
2. On the left navigation bar, click "Support".

Saturday, March 17, 2012

2-15-2012 Meeting Minutes

ACFAC Meeting Minutes  - February 15th, 2012

Members present: Laura, Colleen, Erika, Jay, Kriss, Ann, Ed, Elyse, Jackie

Members Absent: Eric M, Lauren

Guests Present: Rosie, Renatta, Kathy G., Eric W., Dr. Mohabir

1.     Update provided regarding the all-Stanford Advisory Council Meeting.  Laura was put in contact with the organizer of the council meeting.  Laura to get information the location, dates, ect of the meeting and will attend as able.  Others are welcome to attend as well.
2.     The 12th annual Stanford CF Education Day to be held March 3rd from 8:30 am to 3pm.   The ACFAC will have a table in which applications for membership will be available.   The Education Day is open to parents of young children with CF as well as caregivers and adults with CF. Please follow infection control procedures, and those with multi-drug resistant organisms, B. Cepacia and MRSA are asked not to attend.   It is open to those who do not attend the Stanford CF clinic as well.
3.     The ACFAC bylaw revisions were voted on and approved 8-1.
4.     Eric W. spoke with CF clinic coordinator regarding improving communication about required follow-up tests, medications, ect.  It was discussed that it is a hospital requirement and clinic protocol that an end of visit summary is provided upon check out.  It is the printout that includes the medication list as well as any upcoming appointments that have already been entered.  While there is an area for specific recommendations and education, this is not routinely filled out by the mid-level practitioners but can addressed.
5.     The CF Mentor questionnaire was sent to the team for review.  The next step will be for the CF team to evaluate the tool.   More information is to be provided next meeting regarding moving the process forward.
6.     Dr. Mohabir presented the results of the CF Clinic survey.  The survey window was from 11/1 to 1/31 and 16 surveys were received.  The survey looked at the following areas: Ease of getting care, Interactions with staff members, Overall Satisfaction, Team member Satisfaction (by profession).  Overall, the results were positive with a majority of the scores falling in the 4's and 5's (on a 5-point scale with 5 being the highest and 1 being the lowest).  The survey data was pooled by a volunteer and reviewed by Dr. Mohabir and M. Martel, NP.  The plan going forward is to do another 3-month survey with the goal of having 30-35 completed questionnaires.
7.     Several forms are circulating regarding the "We want to hear your voice" flyer.  This flyer includes information about the ACFAC, but is also intended to serve as a way for patients to communicate and provide feedback.   It was discussed that the multiple forms may be causing confusion, and its use / lack of use was discussed. 
8.     The Stanford CF website site now has the "Adult" tab up and running.  Currently on there are the "Get to know your team" questionnaires.  More information to be added based on the brainstorming session held at December meeting regarding topics for the tab.  Colleen to coordinate the supplying of information for the topics in the tab.
9.     The sick call and admission checklists submitted to clinic coordinator.  No recommendations made for changes, and forms to be added to "Adult" tab on Stanford CF center website.
10.  Discussion held regarding the format of the documents submitted.  Please make sure that documents for distribution are saved as .doc or PDF files.
11.  Discussion held regarding confusion of ACFAC tab on the Stanford CF center and the Adult tab on the Stanford CF Center Website.   Improved clarification needed when talking about the 2 tabs, and to keep in mind the different purposes of the tabs.  The ACFAC tab is supposed to contain information related to the council specifically, whereas the Adult tab is a general tab related to Adult topics / concerns for the CF population. 
12.  All anniversary dates received, Jackie to add it to member list and send out contact list to members.

Next meeting set for Wednesday, March 21st 2012 from 5pm to 7pm.

Action Items

1.     Laura will update everyone on the all-Stanford advisory council pre-meeting with Joan Forte, and future meetings with the larger council.
2.     Kriss gives approved bylaw file to Jay for posting on website and she will update where/if appropriate on meeting blog 
3.     Lauren and Dr. Mohabir need to update the council on the mentor questionnaire in March
4.     Laura and Kriss will update council "We Want to Hear Your Voice" flyer pdf so there is only one version and no form at the bottom
5.     Kriss send final "We Want to Hear Your Voice" flyer file to Jay for posting on website and she will update file on meeting blog
6.     ALL members to use .doc or .pdf file format (no .docx) going forward