Sunday, February 17, 2013

2-20-2013 Agenda

Please have 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 timePlease 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.

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 attend via Webex.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, February 20, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room

COUNCIL BUSINESS: Please read all attached documents; they represent a lot of work from a lot of council members.

1.       Introductions (5:00 – 5:10)

2.       Adopt January minutes (5:10 – 5:15)

3.       Quality Improvement info (5:15 – 5:25)
·         Inpatient/outpatient infection protocols (Kathy)

4.       Stanford CF Education Day (5:25 – 5:40)
·         Presentations, content, goals (Colleen)
·         ACFAC presence

5.       Patient-Family Centered Care: ACFAC / CF Center partnership project (5:40 – 6:20)
Supporting CF Center goal “helping patients gets to clinic”

·         Fundraising’s fantastic results to date (Ann, Elyse): refer to materials at
·         Who was Peter Judge? (Ann)
·         Transportation’s final flyers  (Jay, Richard, Brian E, Laura): see materials at
·         Recognizing stealth ACFAC members (curious? good! you’ll find out Wednesday – Laura)
·         Looking ahead to March: new council/center partnership project

6.       Quick updates and check-ins (6:20 – 6:30)
·         Peer2Peer program (Lauren)
·         Clinic operations

7.       Action items (6:30 – 6:40) 

8.       Date/time for next meeting: Wednesday, March 20, 5:00pm-7:00pm


To attend this meeting via WebEx:

Topic: CF Patient Advisory Board 
Date: Wednesday, February 20, 2013 
Time: 4:45 pm, Pacific Standard Time (San Francisco, GMT-08:00) 
Meeting Number: 808 786 852 
Meeting Password: February 

To start or join the online meeting 
Go to yODVhYzVi&RT=MiM0 

Audio conference information 
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To check whether you have the appropriate players installed for UCF (Universal Communications Format) rich media files, go to 


Tuesday, February 12, 2013

ACFAC 1/16/13 Meeting Minutes

ACFAC Meeting Minutes – January 16th,  2013             


Members Present: Laura, Lauren, Elyse, Colleen, Brian E., Jackie, Richard, Jay


Members Absent: Ann, Ed, Brian T.


Guests Present: Eric, Zoe, Kathy


  1. December 2012 meeting minutes approved.
  2. Update provided on clinic goals.  These include emphasis on improving clinic visit attendance to every 2-3 months.  Not only is this the recommendation of the CF Foundation, but research shows regular visits improve overall clinical outcomes.  Ideas also introduced to improve visual display in the waiting room encouraging the theme of "partners in compliance" and working the clinic team.
  3. Fundraising update provided by Elyse regarding the current project of raising funds to assist with transportation to clinic.  The letter is ready to be sent and the plan is to have the letter sent out by February 14th.  Currently there is a list of people that the letter is being sent to.  However, if as a member you would like to send a letter to one of your own contacts, that can be done as well.  The two ways to do that are to contact Ann/Elyse and give them the address and they will send it out, or to let Colleen know and she will send you the letters and you may send them out.
  4. Laura met with Meg to discuss the best method to present the information that was obtained from those researching transportation methods.  Meg indicated to Laura that a handout, brochure-sized, and broken down by route plan from each of the city areas (Sacramento, Monterey, Salinas) to Stanford.  Meg also asked that for the other topics, such as vouchers and childcare, that a message to talk to the social worker about options be placed in the brochure.  Laura, Jay and Richard to work on the brochure.
  5. The council continued the bylaw review.
  6. The council voted in officers for 2013.  Laura will continue as Chairperson, Jackie will continue as Secretary, Colleen will continue as Membership Chair,  and Jay will continue as Website Revision Manager.  Lauren decided to step down as Vice Chairperson, and Richard was nominated and accepted.
  7. Lauren provided an update on the Peer2Peer program.  Training has been completed and the mentors have been assigned mentees.  "Remote" mentoring continues to be encouraged to abide by infection control protocols.   Currently mentors are initiating contact with the mentees.
  8. Colleen provided an update for the CF Ed day, which will be held on March 2nd, 2013.  Invitations being sent shortly.  There will be a table designated for the council and a representative will have about 5 minutes to speak, if desired.  For those who are unable to attend, the CF Ed day presentations are streamed live, and also videotaped and available from CFRI.  Slides will also be available on the Stanford CF Website, and attendee books will be available.  The CF Ed day follows the regular infection control guidelines, and the day is geared more towards caregivers and parents.
  9. Laura provided an update on the voting for photos with bios on website.  The vote was not unanimous, therefore, photos will not be placed at this time.  A discussion was held regarding pros and cons, and ultimately decided that there may be more effective ways to let people know who the council members are.  One example is the buttons that are available to wear for those who would like one.
  10. Next meeting set for Wednesday, February 20th from 5pm to 7pm.

 Action Items

  1.  Laura, Jay and Richard to have a brochure to present by the next meeting.
  2. Laura to follow up with Joan about the idea of a shuttle service.