Wednesday, May 8, 2013

5-15-2013 Agenda

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.  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.

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. Only one individual with CF may be present in the actual meeting room; please contact the chairperson Laura Steuer for further information.

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.

Please have your own copy of the agenda and attachments with you during the meeting.

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) 

Date/Time: Wednesday, May 15, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room

1.      Introductions & meeting guidelines (5:00 – 5:05)

2.      Membership (5:05 – 5:15) 

(Colleen, Jackie)

3.      Adopt April minutes (5:15 – 5:20)

4.      Patient-Family Centered Care: ACFAC / CF Center partnership projects
Current project: “Supporting newly-diagnosed CFRD adults”

a.       Research and findings on possible approaches (5:20 – 5:50)
o   Clinic handouts; new resources (Ed)
o   Support group (Elyse)
o   Mentoring/buddy system (Laura)
o   Social media (Brian E., Meg)

b.      Council discussion: select approach, assign tasks (5:50 – 6:20)

5.      Quick updates (6:20 – 6:30)

·         Fundraising total (Ann)
·         Peer2Peer program (Lauren)

6.      Action Items (6:30 – 6:40)

7.      Next meeting: Wednesday, June 19, 5:00pm-7:00pm


To attend this meeting via WebEx:

Topic: CF Meeting May 2013 
Date: Wednesday, May 15, 2013 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 809 978 217 
Meeting Password: Wel2010come 

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: Wel2010come 
4. Click "Join". 

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

To join the audio conference only 
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 
Call-in toll number (US/Canada): 1-650-479-3208 
Global call-in numbers:
Toll-free dialing restrictions: 

Access code:809 978 217 

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

Monday, May 6, 2013

ACFAC 4-17-13 Meeting Minutes

ACFAC Meeting Minutes – April 17th, 2013                  

Members Present: Ed, Ann, Laura, Elyse, Brian E., Brian T., Richard, Jay, Colleen

Guests Present: Kathy, Karrie, Karen, Sanjeet, Renetta

Members Absent: Jackie, Lauren

  1. March 2013 minutes approved.
  2. Introductions: Renetta introduced Sanjeet, the new pulmonary assistant clinical manager. Also introduced was Karen, who is the new heart/lung transplant manager and is covering for Eric.
  3. Kathy discussed the progress on the last project, the infection control Question/Answer handout.  After the council reviewed and made suggestions electronically, the final product was sent back to Kathy and she presented it to the Infection Control designee for review.  The product was approved and the clinic has begun to distribute it to patients who are being admitted.  The goal is to continue to review the guidelines not only with the nursing staff, the other ancillary staff as well.  Continued review and feedback is being sought and updates to be provided after several months.  Of note, Jay did try to join the webcast held by the CFF after the new recommendations were released, but it was only open to the first 2,000 to sign up.
  4. Discussion regarding the council's new project in partnering with the clinic, supporting newly diagnosed CFRD (Cystic Fibrosis Related Diabetes) patients.  The goal is to provide psychosocial support and "tips" (vs. medical advice) to those who are coping with the new diagnosis of CFRD.  The age group of the newly diagnosed CFRD patients tends to be between the ages 18-34.   Currently, the clinic provides a book and other various written resources, as well as referring the patient to endocrinology and diabetes educator services.  Several aspects for expansion of support were discussed including, means of support (telephone/email/online), set-up of program (formal mentoring vs. informal "resource" list), and distribution of materials (written vs verbal).   The discussion brought out several key ideas for further research as follows: 
    1. The council discussed that while 1:1 support would be helpful, this project does not seem to be as formal as the Peer2Peer program.  In fact, it may just be a one-time conversation on topics within CFRD such as insulin pump information or carb counting.  Another idea brought up was having a resource list of patients who have agreed to be contacted in the event the clinic has a patient with specific questions.  Several council members indicated that training would be required as patients may have more medically-based questions that would not be appropriate for the resource contacts to address.
    2. In terms of online avenues, the council plans to further research the capabilities of using the website as a method information dissemination and/or online messaging, support, chat, etc. 
    3. Another idea was a support group.  The CF support group in May was devoted to CFRD, and depending on its success, the council would like to bring up the possibility of having a separate support group for CFRD.  After discussion, the various areas were split up for members to research.  Please see action items for details
  5. Ann provided an update regarding the fundraising efforts for the transportation project.  To date, there have been 25 donors with a total of $4,765.  Ann still has several people who have plan to donate and feels that the council will reach the $5,000 goal.  The council will continue to follow up with Meg to see how long the funds last and will discuss in later meetings whether this will be a yearly goal.  Laura is interested to see some statistics in several months to see the impact of the funds raised on clinic attendance.
  6. Brian E. attended a meeting that included other Stanford patient advisory council representatives with the focus of address the functionality of the Stanford hospital website and ways to make the website more user friendly.
  7. Jay and Elyse briefly discussed the Peer2Peer program.  Some barriers have been presented, but Meg and Amy (the social worker contact for the program) have been contacted and are aware.
  8. Next meeting set for May 15th from 5 – 7pm.  We will continue to have one CF patient at a time in the room.  Laura to coordinate the next person to attend.


Action Items

  1. Laura / Elyse  - Extend invitation to Meg to the next meeting to provide some insight on the ideas discussed regarding supporting newly diagnosed CFRD patients.
  2. Laura / Elyse – Coordinate with Kathy to bring to Meg the idea of a CFRD support group
  3. Laura – Coordinate with Kathy and Meg ideas for providing training to the potential "resource" contacts
  4. Laura – Coordinate with Kathy to get a copy or idea of the information that is already provided to patients diagnosed with CFRD
  5. Ed  - Coordinate with Kathy to compile a list of applications for Apple/Android that may help in the management of CFRD.
  6. Brian E. – Investigate the possibility of online support / capabilities for website functionality