Wednesday, March 9, 2011

3-16-2011 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 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

Meeting Date/Time:  Wednesday, March 16th, 2011 from 5:00 – 7:00 P.M.
Location:  Blake Wilbur Conference Room


INTRODUCTORY REMARKS 
A.  Introduction of Council Members (if guests are present)

B.  Introduction of Guests (if guests are present)
 

C.  Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/03/acfac-2-16-11-minutes.html
 


NEW BUSINESS
1. Determining Council Pace and Work Process – Kriss (Norma, Lindsey)
  • Contact information: Members, Advisors, Interested Persons (as noted in bylaws page 3) – Erika 
  • Speed of council
  • Approval process and project completion procedures
  • Living documents
    (add revision note to bottom left corner of all docs? "rev 3/11" or "doc name, rev 3/11"?)
  • "Safe person"
    Should we have a "safe person" (who does not hold an office - not our Chair, not Co-Chair, etc.) who all members can bring their concerns to that will protect anonymity and work behind the scenes to assist with any council member concerns?
2. Proposed WebEx etiquette – Lindsey (Kriss)
  • Please refer to the Adult CFAC meeting agenda each month for WebEx log in and pass code instructions (note: the pass code changes each month).
  • Please log in at 4:50PM in order to prepare for our 5:00PM meeting.
  • Please do NOT place your phone on speaker and please do NOT use your computer's built-in microphone and speakers. It is best to use a headset or a phone for your voice. Please have only one person on a phone or computer at a time.
  • Please identify yourself by name when you are when speaking. 
  • Please let the other members know right away if we (in the room) are not speaking loud or clear enough.
3. How do we ensure all members (particularly WebEx members) are included, heard, and can hear during our meetings
  • how to avoid talking over one another, multiple people talking at the same time, etc.?

OLD BUSINESS
4. Adult CFAC Group identity: Facebook group presence  – Eric (Kriss)

5. Business card  
6.  Update on Distribution of Inpatient and Clinic "We Want to Hear Your Voice" Flyers
7. Update on Hospital form "Help us, Help you" – Kriss (Rudy)
8. Council sign up sheet at the CF clinic front desk  – Eric (Kriss) 


9. Per our feedback, CF center is discussing MyHealth - Charlene (Eric and Kriss)


10. Review council projects and CF center response – Kriss (Eric)
11. ACFAC Website up: http://cfcenter.stanford.edu/acfac/
  • do we want bios with pictures? 
  • elect a website revision manager for feedback, changes, and additions? Committee? 
  • can this person or committee make changes per their judgement? For example, if they get new helpful links and/or new member bios can they post them and just make note of them on the next agenda for review after the fact? 
  • Kriss will pass off 3 new member bios, and the contact information of who to contact for website revisions  (if we elect a new website revision manager)
12. Bio staff/doctor questions – Ed (Erika, Lori, etc.)
13. "New council member" folder, package, or page – Norma (Jackie / Lori)
14. Create a council resource page? – Kriss    
  • page with links to current files like "We Want to Hear Your Voice" flyer, business cards, etc.?
15. Return patient clinic form – Kriss (Elyse)
  • pdf on web?
  • print a new revised version? (we are out)
17. Get the word out: 
  • Townhall date changed:
    Adult Cystic Fibrosis Town Hall Meeting
    Wednesday, March 23rd, 2011, 6pm to 7:15pm

    Li Ka Shing Center for Learning and Knowledge
    291 Campus Drive

    Masks and Hand Cleaners will be provided.
     WebEx will be available.
  • The CF Adult support group has WebEx.
    Please see http://cfcenter.stanford.edu/ and the lower, left corner of the page section "CF SUPPORT GROUP" for WebEx directions each month. 
18. Review bylaw revisions (see agenda item #13 for review file) – Norma
Set date/time for next meeting – Wednesday, April 20, 2011


___________________________________
To attend this meeting via WebEx: 
Meeting Number: 923 861 963
Meeting Password: march


To join the online meeting (now from mobile devices too):
1. Go to https://stanford.webex.com/stanford/j.php?ED=157454737&UID=1238048622&PW=NNDMwZmU3YmM4&RT=MiM0
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: march
4. Click "Join".


To join the audio conference only:
To receive a call back, provide your phone number when you join the meeting, or call 1-650-429-3300 and enter the access code: 923 861 963.

Saturday, March 5, 2011

2-16-11 Minutes


 Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend 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. If you would like to attend via teleconferencing, please contact Erika Harrington mrs.harrington@sbcglobal.net (the current Advisory Council secretary). She will let you know how you can participate.  (Web conferencing/Skype not yet available.)



CF Advisory Council Meeting Minutes 2/16/2011

Present:

Council Member: Ed, Dave, Rudy, Rosie, Ann, Lori, Norma, Kriss, Erika, Colleen, Lindsey
Via WebEx or teleconference: Lizeth, Caleigh
Guests: Lauren, Jackie, Elyse, Arthur

 During the closed session the following items were presented, discussed and voted upon:

  • The council voted in 5 new members: Jackie Rotier, Lauren Catron, Jay Archibald, Elyse Elconin-Goldberg, and Laura Steuer. 
  • The council voted to revise the bylaws and include all members in closed sessions. This is revised from including only voting members. 
  • The council voted to enforce attendance and include "members in attendance" and "members not in attendance" on all monthly minutes from this point forward. 

Introductory Remarks:

  1. All council members introduced themselves for the benefit of those using remote attendance methods.
  2. Guests also introduced themselves.
  3. Quick Cross Infection Control Reminder given by Colleen.
  4. Minutes from previous meeting approved.
Old Business:
  1. a. Norma Kipp offered to have the Co-Chairperson remind us at the end of our meetings of our new meeting responsibilities or "to dos". It has been approved by council that the Secretary will keep track of Advisory Council attendance and will report any non-compliance to the Advisory Council Chairperson.
     b. Proxy voting for an absent CF council member during any meeting was voted upon and passed.  Should a CF member be absent, they can e-mail their vote in writing to any other council member that will be attending the meeting.
  2. The council was unable to discuss our presence on Facebook due to Eric's absence.
  3. The ACFAC business card was approved.  Kriss will send the pdf to Colleen to print out.  Business cards will be available for distribution at the next meeting.
  4. a. We were unable to get an update on the distribution of "We Want to Hear Your Voice" from the clinic side due to the absence of Charlene at the meeting. 
    b. Rudy was able to give us an update from the hospital side of the flier with positive remarks from the CF community.  Fliers were passed out at the hospital the week of February 13th.
    c. The e-mail version of "We Want to Hear Your Voice" was voted upon and approved.
  5. The new look of the ACFAC website was voted upon and approved to launch.
  6. The hospital form "Help Us, Help You" was voted upon and approved by the council in both pdf and Word doc format.
  7. A committee for the bio questions for the CF Team has been established.  The new committee is Lori, Erika, Elyse, and Lizeth with Ed being chairperson.  An update will be presented at the next meeting.
  8. The "New Council Member" folder is now in a new committee containing Norma, Lori, and Jackie
    a. Kriss and Lori presented the feedback from their meeting with Dr. Weill. He is happy and eager to help improve the Adult CF Clinic. He would like to meet with ACFAC members on a regular basis. 
    b. Adult Cystic Fibrosis Town Hall Meeting scheduled for:

    The Evening of Monday, March 21, 2011 6-7:15pm
    Li Ka Shing Center for Learning and Knowledge
    291 Campus Drive, Room #102
    Masks and hand cleaners will be provided

New Business:

  1. Dr. Weill would like a form filled out prior to patient appointments to that patient concerns  can be addressed.  A form with specific questions was presented by Kriss and approved by council members.  Kriss is willing to try this form out for herself and will present her feedback and the next meeting.
  2. Norma will adjust the bylaws to reflect the changes that were voted upon during today's closed session.
  3. Members attending the meeting via WebEx need to send their opinions and additional ideas for the clinic visit form to Kriss.
  4. Everyone wanting to attend the council meetings via WebEx on a permanent basis   needs to e-mail Kriss.
  5. Next meeting is scheduled for Wednesday, March 16, 2011, 5-7pm