Wednesday, April 10, 2013

ACFAC 3-20-13 Meeting Minutes

ACFAC Meeting Minutes – March 20th, 2013                

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

Members Absent: Elyse

Guests Present: Eric, Kathy

  1. February 2013 minutes approved.
  2. Feedback/comment session regarding the Stanford CF Ed day for those that either attended or viewed the topics via the internet.  Comments included: Richard gave a great speech regarding the ACFAC, and most found the speakers were informative and interested in the topic he/she was presenting.  Those that viewed the topics via the live internet streaming liked that questions were able to be submitted via text/email.  Suggestions for next year included more advertising for the internet streaming, and expanding on the topics being covered in the flyer.
  3. Kathy helped to clarify and discuss the new CFF Infection Control Protocol.  The CFF Infection Control committee had been working at the national level for the past two years.  Sufficient scientific evidence has led to the change in the protocol.  The guidelines now recommend a 6ft rule instead of 3ft rule for instances where CF patients are in the same room (i.e. clinic appts) and outdoor events; and recommend that no more than 1 CF patient in the same room during indoor meeting events (i.e. fundraising events, Ed days).  These guidelines stem from the research that shows there is a higher risk of cross infection between CF patients than previously understood.   While the exact evidence was not provided with the release, the CFF will be holding a presentation on the evidence, that will be streamed on the internet. With regard to the Stanford CF Center, the center follows the CFF guidelines and plans are in the works to provide for less time spent in the waiting room and the utilization of adjacent waiting spaces at clinic to follow the 6ft rule.  Kathy also discussed that the masks CF patients wear are not designed to prevent transmission of bacteria, but to allow those in the waiting areas to know who has CF, who does not, and to be able to space accordingly.
  4. Meg now has the flyer/brochure for the "getting patients to clinic" project.  Meg also sent a thank you letter to the council for the project and fundraising efforts.  As of today, 19 donors have donated $4,225 and Ann expects to meet the $5,000 goal.  Laura is in the process of sending out thank you letters to each of the donors.
  5. Kathy discussed potential new goals for the council to begin working on. The two topics that were agreed on by the council were the goal of supporting CF patients who have been newly diagnosed with diabetes, and working on a flyer in conjunction with Kathy and the nursing staff on B3/C3 for an infection control flyer.  After discussion, it was voted on to address both goals, and that the infection control flyer could possibly be completed prior to the next meeting via email.
  6. Kathy will send the draft of the current flyer to Laura, and Laura to coordinate an email revision/recommendation process.  The purpose of the flyer is to educate CF patient and their families/caregiver regarding the idea of contact isolation.  The format is to be a FAQ – type of handout. 
  7. The council brainstormed some early ideas about the goal of supporting CF patients newly diagnosed with diabetes.  Suggestions included: a buddy system (similar to Peer2Peer with less formality and short term), having a "pool" of CF patients that have allowed self to be contacted to provide advice, visual tools such as tip or resource sheets, and online chat group / webinar.  Kathy indicated that it can take at least a year to develop a routine to manage diabetes, and this includes regular blood sugar checks, following up with recommendations such as ophthalmology exams, eating right, and carb / insulin ratios.
  8. Renetta will be stepping down from the Assistant Clinic Manager role and moving to a more "hands –on" role.  There will be an interim person hired, more updates to come.
  9. Laura is writing a piece for the next CF newsletter about the Fundraising/Transportation that has just been completed by the council. 
  10. Next meeting set for Wednesday, April 17th  from 5pm to 7pm.


Action Items

  1. Laura to email out the draft of the infection control flyer once received from Kathy for council members to make suggestions.
  2. Laura to send out the information regarding the streaming of the CFF presentation discussing the evidence behind the new CFF Infection Control guidelines




4-17-2013 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.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, April 17, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room

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

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

3.      Patient-Family Centered Care: ACFAC / CF Center partnership projects (5:10 – 6:20)

a.       Follow-up from March project (5:10 – 5:20)
·         Contact Isolation guidelines for C3 and B3 hospital units, see

b.       New project: “Newly-diagnosed CFRD” (5:20 – 6:10)
·         Barriers to CFRD management; knowledge base; checking sugars; food issues
·         Short-term support; buddy system; online/chat support; printed material; pool of similar patients; other

c.       Tasks and assignments  (6:10 – 6:20)

4.      Quick updates and check-ins (6:20 – 6:30)

·         Fundraising totals (Ann, Elyse)
·         Peer2Peer program (Lauren)
·         Stanford website review & CF use cases (Brian E.)

5.      Action items (6:30 – 6:40) 

6.      Date/time for next meeting: Wednesday, May 15, 5:00pm-7:00pm


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