Thursday, April 7, 2011

3-16-2011 Minutes


3-16-2011 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 3/16/2011

Present:
Council Members: Norma Kipp, Erika Harrington, Kriss Benson, Ann Robinson, Laura Steuer, Ed Kinney, Jackie Rotier, Lauren Catron, Lori Kipp, Jay Archibald, Elyse Elconin-Goldberg, Caleigh Haber, Lizeth Haber.

Guests: Arthur Yang, Charlene Kell, Renetta Roberson, Eric Williams

Absent:
Dave Cartnal, Colleen Dunn, Lindsey Martins.

Introductory Remarks:


  1. All council members introduced themselves for the benefit of those using remote attendance methods.
  2. Guests also introduced themselves.
  3. Minutes from previous meeting were approved with the following corrections (these corrections have been made to the February minutes):
  • 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 all 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.
  • Norma Kipp is not responsible to list council jobs, she has offered to remind us at the end of the meetings of their responsibilities.
New Business

  1. Council Pace and Work Progress
  • The speed and work progress of the council was discussed. The council decided that we were happy with these items and didn't feel like we needed to slow down. We came to the conclusion that if we do start to move too fast, please feel free to speak up and/or ask for help.
  • Living documents were discussed, voted upon and passed that a revision note needs to be added to all documents.
  • The potential of having a "safe person", someone who does not hold an office, who all members can bring their concerns to that will protect anonymity and work behind the scenes to assist with any council member concerns was voted upon and denied. Many council members felt that we can bring any concerns about the council out and discussed openly.
  1. Proposed WebEx etiquette
  • 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 don 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 speaking.
  • Please let the other members know right away if we (in the room) are not speaking loud or clear enough and vice versa.
  • Although Lindsey Martins was absent at this meeting, the council was still able to discuss this item and these suggestions. Positive remarks were said with these suggestions and the council voted to pass these changes.
  • The council discussed how we can ensure that all members (including WebEx participants) be included and heard during the council meetings. The council has decided that whenever a person speaks they will identify themselves first before they speak. This way those joining the meeting via WebEx or teleconferencing can identify who is talking. It was also discussed at the meeting that on WebEx the agenda won't show during the meeting to the image of the conference room attendees and those on WebEx will have a larger picture. At this time it was agreed upon that Erika Harrington (Adult CFAC secretary) will call each vote since she is already in charge of attendance.
    Old Business
  1. The Adult CFAC Group having a Facebook presence was discussed. What the council was told is that should we have a Facebook identity we would have to update our Facebook page several times per week and therefore weren't sure if we wanted to currently take on this responsibility. Some concerns were also brought up about having a Facebook presence. The concerns were that many people on Facebook tend to vent and therefore may go the wrong way along with the possibility of negative and inappropriate things being said. The council voted on this item and has decided to place our Facebook page on hold for now. The Stanford media representative can offer us more info on a Facebook presence once we decide to have the council join Facebook.
  • To add to getting the word out about our council, a parent at St. Joe's Children Hospital in Paterson, NJ has asked for advice creating they're own CF Advisory Council. They had found our council through the Stanford Advisory Council website. The council discussed the best way to help them out and was decided upon that Kriss Benson will send Norma Kipp's e-mail address to the contact in Paterson, NJ and that Kriss will put them in touch with Stanford's Pediatric CFAC.
  1. The councils business card was talked about and a suggestion for a slight design change was decided upon and Kriss Benson will make the correction. The section where we can write our name on the card will be removed and we can just write our name on the back of the card. We also decided to print our own cards in order to not spread germs.
  2. An update on the distribution of inpatient and clinic flyers "We Want to Hear Your Voice" from the clinic side is that the flyers are in the clinic located at the check in desk. Any filled out flyers will be collected and brought to our meetings either by Charlene Kell or Renetta Roberson.
  • From the inpatient side of things Rudy Arthofer was not present at this meeting, however, Lori Kipp had spoken to earlier and was told that the flyers are being passed out, only in Unit C, and that there have been no responses yet.
  1. An update on the hospital form " Help Us, Help You" was unavailable due to Rudy Arthofer's absence. Eric Williams will discuss with Rudy some distribution types for this form.
  2. The topic of having a council sign up sheet at the CF clinc's front desk was brought up and according to Eric Williams there are some HIPPA laws that this may interfere with. Eric Williams will look into it more and get back to the council.
  3. Some written concerns regarding MyHealth were brought up to Charlene Kell. Many CF patients have noticed that the CF Clinic doesn't show up on MyHealth. She will look into the issue.
  4. For our ACFAC website Lori Kipp has volunteered to become the website revision manager. The council voted that the website revision manager and/or council can make changes as long as it is brought up to the council and approved. At this meeting the council decided not to have pictures of ourselves located on the ACFAC website. It was also confirmed by Kriss Benson that our website is read only.
  5. Some ideas for change were brought up about the return patient clinic form. Kriss Benson will add integrative medicine or alternative medications to the form. A hold on this form was voted and passed once this addition is made. According to Kriss Benson, Kathy Gesley and Dr. Weill of the CF Clinic are interested in sending this form to CF patients before their appointment in clinic via e-mail or postal service. So far, positive remarks have been made about this form both through CF clinic staff and CF patients.
  6. A vote for a revision of the council's tri-fold brochure was brought up and after much thought and discussion the vote was to get rid of the brochure instead of just a revision of it.
  7. Get the word out:
  • Town Hall date has changed:
    Adult Cystic Fibrosis Town Hall Meeting
    Wednesday, March 23rd, 2011, 6 to 7:15pm
    Li Ka Shing Center for Learning and Knowledge
    291 Campus Drive
    *Masks and hand cleaner will be provided. WebEx will be available.
  • The CF Adult Support Group has WebEx.
    Please see http://cfcenter.stanford.edu/ at the lower left corner of the page section "CF SUPPORT GROUP" for Web Ex directions each month.
  1. A few items that were on the agenda for this meeting were not discussed due to time constraints and will be discussed next time. The items that were not discussed are:
  • Bio Staff/Doctor questions
  • "New council member" folder, package, or page
  • Create a council resource page
  • Review bylaw revisions
  1. Our next council meeting is scheduled for Wednesday, April 20, 2011, 5 to 7pm.

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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)
16. Council tri-fold brochure. Revise? (review file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMMWExYmY4ZDQtOWQ2Zi00ZmZhLTllMWMtMWZmYjM0YjI1Y2My&hl=en&authkey=CPyM_yw) – Kriss
  • 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.
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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

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Tuesday, February 8, 2011

2-16-2011 Agenda

Please print your own copy of the agenda and review the 9 "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 15 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. If you would like to attend via WebEx conferencing, please contact Rosie Flores by email at RFlores@stanfordmed.org  at least 24 hours prior to meeting time.  She will respond with information on how to participate.

The Cystic Fibrosis Adult Patient / Family Advisory Council Agenda

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

CLOSED SESSION (5pm to 5:30pm)
A. Vote to revise bylaws to include all members in Closed Sessions (not just voting members) 

B. Vote on New Member Applications per Colleen's Summary and Recommendations (see Colleen's email: "CF adult council applications")

C. Discuss Member Attendance Policy
  • Vote on enforcing 80% Attendance Policy anew in 2011 (starting over in 2011 since 80% attendance re-approved at 1-19-2011 meeting)
  • Add "members in attendance" "members not in attendance" section to minutes?

INTRODUCTORY REMARKS (starting 5:30pm)

1.  Introduction of Council Members (if guests are present)

2.  Introduction of Guests (if guests are present)

3.  Cross Infection Control Guidelines Reminder – Colleen
 
4.  Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/02/1-19-2011-minutes.html


OLD BUSINESS

5. Review of the responsibilities of each office (print file, bylaws: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNjFkOWM0ZjYtY2JhYi00NWEyLTg4Y2YtNGQxY2ZlNDNiNmU0&hl=en&authkey=CL3KlYYB ) – Norma
  • Discuss voting policy when it comes to CF families
    (If the person with CF is not present, can the family member vote in their absence?)    (If a member is absent, can they instruct their vote by proxy to another member?) 

6. Adult CFAC Group identity: Facebook group presence? – Eric

7. Business card (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNWQxMWQ2MzMtN2E0YS00OTRjLWI3YWUtOTE5ZGIyY2YxZGU0&hl=en&authkey=CMb59v0B ) – Kriss 
  • vote to approve final business card file.
8.  Update on Distribution of Inpatient and Clinic "We Want to Hear Your Voice" Flyers – Charlene and Rudy
9.  Update on Website (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMY2EyZjY0NWUtZjRmZS00YTQxLTkyYjItMGE2MzEzOTlkMzEy&hl=en&authkey=CMii44AJ ) – Kriss / Ann
  • Ann has agreed to review website content for consistency and errors 
  • vote to approve this website version (with Ann's edits) to go live now (send now "incomplete"? Can be changed, added to, and revised going forward...)
10. Update on Hospital form "Help us, Help you" (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYTcyMmZmMTEtMTkwNi00ZjhkLTkwZjgtODA0YWU3MzU1NzQ5&hl=en&authkey=COTjx74J ) – Kriss 
  • envisioned 2 files available: 1 pdf to print out and fill out with pen and paper, 1 Word doc to download and fill out with Word (or other document editing program)
11. Bio staff/doctor questions  – Ed
12. Create "New council member" folder committee
13. Summary of conversation w/ Dr. Weill about patient feedback (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZTFjNzZmYjUtMDFiMy00ZjA0LTkwNjctMmI3ZTAxMGJhYzQ1&hl=en&authkey=COzw_eoJ ) – Kriss / Lori 
  • Dr. Weill passed our feedback on to the CF team as a whole and reported "The meeting with the team went well. We all appreciate the feedback. Also, we look forward to great participation in the upcoming Town Hall meeting." 
  • Adult Cystic Fibrosis Town Hall Meeting scheduled for:
    The Evening of Monday, March 21st, 2011
    Li Ka Shing Center for Learning and Knowledge
    291 Campus Drive, Room 102
    Masks and Hand Cleaners will be provided

NEW BUSINESS
14. Adult CF Center Return patient form  (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNGYxYTY4YTAtN2U5YS00Y2E2LWFjN2YtODFmMzUxMWQ1OGY5&hl=en&authkey=CNTnjfIK ) – Kriss / Lori 

15. WebEx attendance by default
  • Rosie has agreed to have a list of ACFAC members that receive a WebEx invite each month by default (In other words, they do not have to request an invite each month. Instead you would only notify Rosie if you were NOT attending via WebEx). 

Set date/time for next meeting – Wednesday, March 16, 2011
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Friday, February 4, 2011

1-19-2011 Minutes


1-19-2011 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 1/19/2011

Present:

Council Member: Norma, Lindsey, Colleen, Ann, Eric
Via WebEx or teleconference: Kriss, Erika, Lori, Ed, Lizeth, Caleigh
Guests: Lauren, Jay, Andrew

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. The review of the responsibilities of each office will be reviewed at the end of each meeting by Norma
  2. Adult CFAC Group Identity:
    b: A Google voice phone # has been approved by the Council and is (650) 549-5102.
    c: An e-mail address for the ACFAC has been created and approved by the Council. The e-mail is: stanfordcfac@gmail.com
    d: The meeting blog is well liked by Council member and is approved.
    e: The presence of a Facebook page for the ACFAC has been approved by the ACFAC, however, Eric needs to look into any possible HIPPA violations this may cause.
  3. A business card from the ACFAC has been approved by the Council and will contain our new logo that has been approved and will list our contact phone # as well as website. They will be available @ the Adult CF Clinic as well as through Colleen.
  4. The distribution of inpatient and clinic "We Want to Hear Your Voice" fliers is in the works of getting printed. They should begin to get passed out to patients starting the week of January 25 according to Rudy.
  5. The ACFAC will have their own link on the CF Center Website. Norma brought up the idea to also include helpful links on our website. We will discuss helpful link ideas at our next meeting. Also, those members of the ACFAC, if you have not sent in your bio for our website please send as soon as possible to Kriss.
  6. The update on hospital form "Help Us, Help You" is on hold until the next meeting.
  7. The Bio staff/doctor questions have been narrowed down thanks to Kriss, Lori, Erika, Ed, and Norma. However, it has come to the councils attention that we should be directing these questions to not only doctors but to other staff members that come into contact with CF patients. The council have also decided that some questions overlap with those on the Stanford Hospital and Clinics website, therefore, Kriss, Lori, Erika, Ed and Norma are going to go through the original list of questions and come to a more appropriate list of questions.
  8. The council decided it would be best to create New Council Member Folder.

New Business:

  1. The questions that were passed around to the ACFAC from Dr. Weill via Lori and Kriss were discussed. The answers we got from these questions were of mixed feelings. Lori and Kriss have a meeting scheduled with Dr. Weill to discuss the feedback they received.
  2. It is still approved by the ACFAC that the attendance shall remain at 80% or 10 meetings/year.
  3. Collen brought up the fact that the members of the ACFAC should start the next meeting promptly at 5pm to discuss new memberships and vote on them so those having to leave early will still have a chance to vote while non-members and guests should arrive @ 5:30pm.
  4. WebEx is having some technical difficulties and Eric will look into it.
  5. The next meeting has been scheduled for Wednesday February 16th 5-7pm in the Blake Wilbur Conference Room.
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Monday, January 17, 2011

1-19-2011 Agenda

Please print your own copy of the agenda and the 5 attachments to assist in cross-infection control!

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 WebEx conferencing, please contact Rosie Flores by email at RFlores@stanfordmed.org  at least 24 hours prior to meeting time.  She will respond with information on how to participate.

The Cystic Fibrosis Adult Patient / Family Advisory Council Agenda

Meeting Date/Time:  Wednesday, January 19th, 2011 from 5:00 – 7:00 P.M.
Location:  Blake Wilbur Conference Room


INTRODUCTORY REMARKS

1.  Introduction of Council Members (if guests are present)

2.  Introduction of Guests (if guests are present)

 3.  Cross Infection Control Guidelines Reminder – Colleen
 
4.  Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/01/12-15-2010-minutes.html


OLD BUSINESS

5. Review of the responsibilities of each office – Norma

6. Adult CFAC Group identity – Kriss / Colleen 
7. Business card (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMM2Q0NjdjMjYtYjljYy00ZGNlLThjZmUtMmIxMjhjYzE0ODkx&hl=en&authkey=CJaB75wI) – Kriss 

8.  Update on Distribution of Inpatient and Clinic "We Want to Hear Your Voice" Flyers – Eric, Charlene and Rudy

9.  Update on Website (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZGJiMTA0YjYtZjA3OS00MTcwLTgyNDctZmZlYzZlYWE2YjMx&hl=en&authkey=CI7VtfsO) – Kriss / Eric 
10. Update on Hospital form "Help us, Help you" (on hold until next month) – Kriss 
11. Bio staff/doctor questions (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZTNiMThhMzItNzEyNS00YzkxLWExYjYtZjA4MTBhMGVkOWE0&hl=en&authkey=CKm3wzA) – Ed / Lori 
12. "New council member" folder – Norma / Colleen 

NEW BUSINESS
13. Conversation w/ Dr. Weill about patient feedback (print file: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNDkyZDExMTktNWEyZS00MGI0LWExMDEtYTBlMjg0MGYxMjVj&hl=en&authkey=CM-ux8QJ ) – Kriss / Lori 

14. Membership requirement discussion – Kriss / Norma 
(80% or 10 meetings, 75% or 9 meetings, 66% or 8 meetings per year)

Set date/time for next meeting – February 16, 2011
Google meeting event
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Thursday, January 13, 2011

12-15-2010 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 Lori Kipp at dakipper2@yahoo.com (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 12/15/2010

Present:  
Council members: Norma, Ed, Lori, Ann, Lindsey, Colleen, Eric
Via WebEx or teleconference: Kriss, Erika
Guests:  Zoe

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 meetings approved.
5. Stanford Liason Report- Joan thinks that exchanging agendas & minutes is a good idea, however, Norma has yet to receive anything.  All CFAC minutes & agendas should be emailed to Joan.

Old Business
6.  Bylaw changes approved.
7. Election of Officers – Kriss has agreed to chair the council but will need lots of council support.  Norma will co-chair.  Erika has agreed to be the secretary.  Colleen is the new Membership Chair and reminded us that we are all supposed to be actively recruiting new members.
8. Inpatient & clinic flyers – Kriss believes that the "We Want To Hear Your Voice" flyers have been implemented on C3, though Ed & Lindsey haven't seen any yet.  The flyer has been given to clinic, but as of the meeting date, had not been handed out as far as we know.  Lindsey is giving the flyer to older teens & parents at LPCH.
Draft 5 of the content of the "Help Us Help You" flyer is approved as final.  
9. Website update- The old CF Center website (http://cfcenter.stanford.edu) update is complete and can be linked to a (so far non-existent) council site.  Eric has scheduled a conference call with IT regarding the council website and both Colleen & Kriss will join in the conversation.  Lori will email our website "want" list to Eric & Kriss.  Also, Kriss will set up a CFAC blog where we can post minutes, agendas and more in the future.  Lori will email minutes to an email address that posts to http://cfacmeetings.blogspot.com/ and it will function as a website.
Doctor bios & info should be on our website or linked to our website.  Lori, Ed, Erika and Kriss will work on refining the list of questions to ask the doctors.  It was suggested that we keep it to 5 or 6 questions so as not to overwhelm them.  Erika will take the first pass at the questions, followed by Kriss, Lori and lastly Ed.  
10. CF Adult Support Groups – everyone with any relation to CF is welcome – family, friends & patients. 
Meetings will be held the first Friday of each month from 12 P.M. (noon) to 1 P.M. at the Li Ka Shing Center for Learning and Knowledge, Rm 304. 
So, upcoming CF Support Group Meetings are: January 7th, February 4th, March 4th, etc from noon to 1pm. 
11. The info from the general patient survey that we all receive in the mail is not CF specific and so won't be helpful to our clinic.  Zoe & Colleen reported that they sent out a survey to all the CF adults and received only 20 responses.  Eric suggested that we might be able to do a CF specific survey.
New Business
12. Topics for the CF education day were discussed and the general feeling is that if topics that interest adults are included, adults would be more likely to attend.  In the past, the majority of the info has applied to pediatric patients.  A couple of suggested topics are "How do you qualify for SSI or SSDI?" and "What qualifies you for the transplant list?"
13.  The next meeting will be Wednesday, January 19, 2011 from 5-7pm in the Blake Wilbur Conference Room. 
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