Saturday, March 16, 2013

3-20-2013 Agenda

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

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.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

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

1.      Introductions (5:00 – 5:05)

2.      Adopt February minutes (5:05 – 5:10)

3.      Stanford CF Education Day (5:10 – 5:20)

·         Feedback, thoughts, sharing

4.      CFF Infection Protocol press release (5:20 – 5:35)

·        Medical and social ramifications

5.      Patient-Family Centered Care: ACFAC / CF Center partnership project (5:35 – 6:20)

·         Presentation by staff: What are the current clinic goals/projects? (5:35 – 5:50)
·         Discussion by council: Which goal/project shall we undertake? Assignment of tasks?  (5:50 – 6:20)

6.      Quick updates and check-ins (6:20 – 6:35)

·         Fundraising update: Some great news!  (Ann, Elyse)
·         Clinic operations
·         CF newsletter (Laura)

7.      Action items (6:35 – 6:40) 

8.      Date/time for next meeting: Wednesday, April 17, 5:00pm-7:00pm


To attend this meeting via WebEx:

Topic: CF Advisory Council - March 
Date: Wednesday, March 20, 2013 
Time: 4:45 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 800 309 719 
Meeting Password: march 
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Sunday, March 10, 2013

ACFAC 2-20-13 Meeting Minutes

ACFAC Meeting Minutes – February 20th, 2013             


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


Members Absent: Elyse, Lauren


Guests Present: Eric, Zoe, Kathy


  1. January 2013 minutes approved.
  2. Kathy discussed the upcoming Quality Improvement Initiatives that members of the CF team are working on.  The two upcoming areas are to improve the understanding in clinic and while inpatient of contact isolation and what it means; and to look further into the sleep/wake cycle and how it is affected by an inpatient stay.  Discussion was held regarding the first topic and Kathy is seeking continued feedback about whether staff members are adhering to the infection control protocols while in clinic and while inpatient.  The discussion held indicated that not all CF patients, family members, and caregivers understand the infection control protocol and continued education would help make this area more clear.  For the second topic, the goal is to investigate how modifications to the daily routine of an inpatient stay affect the sleep/wake cycle, as well as the importance of fitting all daily treatments in while inpatient.  Kathy is seeking continued feedback on these areas, so feel free to email her with any other comments that you may have on the topics.
  3. Update on Stanford CF Education Day provided by Colleen.  Currently there are 44 people signed up. The CFRI will be live streaming the presentations, and slides of the presentations will be available on the Stanford CF Center website.  Discussion was held regarding whether or not there was a way for people viewing live via the internet to participate and ask questions.  While a "web-ex" type situation is not currently available, it was decided that Colleen would contact CFRI to see if an email/text option can be set-up.  Colleen plans to discuss further possibilities for next year's Ed Day with the CFRI group, to see what, if any, options are available to increase the ability of those viewing via the internet to interact with the group. 
  4. Ann provided an update regarding the fundraising project for helping patients get to clinic.  To date, $2500 has been raised, with 4 checks having been received.  It was requested if "Thank You" letters could be printed to send with the tax deductible donation acknowledgement.
  5. Laura, Jay, Richard, and Brian E. finalized the transportation information and presented a brochure detailing the different routes that those coming from outlying areas can take to get to clinic.  The information was compiled into an easy-to-follow format and will be passed on to Meg to begin distribution to those in those areas.   Once completed, Laura asked permission from the council to send an email to the team, indication that the project had been complete.  No objections.
  6. Laura recognized the hard and "behind-the scenes" work of two members, Ann and Jay for their contributions to the ACFAC/CF center partnership project: "Helping patients get to clinic".  Ann led the fundraising piece while Jay spent hours personally checking the transportation routes with technical detail.  Great job!
  7. Laura followed up with Joan Forte regarding the idea of an Enterprise-run van-pool to assist with transport from the airport to Stanford. Stanford's shuttle only transports to the airport. It has been researched in the past by Stanford's Transportation Administrator for a way to facilitate transport to the hospital by working with airport shuttles.  However, this was not able to be arranged.  Enterprise does offer a van-pool, organized by the individual clinics' social workers and paid for by Stanford.  This is another option, but would take a significant amount of coordination by the social workers.   Laura to discuss this with Meg to see if it is a realistic goal worth pursuing.  
  8. Update on clinic operations.  Please be reminded that if you have any concerns about clinic, that you may also contact Renita directly.   Rosie has moved back to her original department, and she is being replaced by Karrie O'Neill. Her email is  KO'
  9. Next meeting set for Wednesday, March 20th from 5pm to 7pm.


Action Items


  1. Laura to bring Ed Day materials to Colleen (business cards, buttons and flyers)
  2. Laura to meet with Kathy and Dr. Mohabir to get ideas for the next ACFAC/CF Center partnership project
  3. Laura/Brian E. to discuss with Meg if the van-pool is a realistic and feasible goal