Wednesday, April 13, 2011

4-20-2011 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, April 20th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS
NEW BUSINESS 
  1.  Patient experience at clinic - Anyone (who has been to clinic in last month)
     - discuss new patient form, and how new changes are going for patients
     - "We Want to Hear Your Voice" clinic flyer feedback response sheets - Renetta
  2. Quarterly meeting due with Dr. Weill (due end of April) - Kriss (Erika)
    a. Request information from Dr. Weill:
     -  how is the return patient form going from a staff perspective?
    b. Relay information to Dr. Weill:
    -  contacted by other advisory council in NJ, impacting more than just Stanford CF patients
    - ALL Brainstorm for April ACFAC meeting: list of 10 things we want to relay to Dr. Weill
     c. Who would like to represent us going forward at these quarterly meetings?
  3. Advising the CF Clinic
    -  brainstorm ideas for getting better communication from the whole Stanford CF Adult population (more than just the same 10% as discussed at Town Hall)
    -  research team doctoring vs. individual doctoring, statistics for patient outcomes - Laura
    -  US News Report - Erika http://health.usnews.com/best-hospitals/stanford-hospital-and-clinics-6932330/respiratory-disorders
  4. Remembering Lori Kipp: http://www.kippllc.com/MemServ.html
    from Dave - http://www.youtube.com/watch?v=dipFMJckZOM
  5. Member anniversary date - Erika

OLD BUSINESS
  1. Distribution of Hospital form "Help us, Help you" – Eric (Rudy)
    - posted and available here (2nd bullet): http://cfcenter.stanford.edu/acfac/links.html
    - what ideas did the staff come up with to distribute this?
  2. Council sign up sheet at the CF clinic front desk – Eric
  3. Update on MyHealth issues - Charlene, Renetta
    - The CF clinic does not appear as a point of contact at all for some CF patients through MyHealth.
    - There is no clear path to communicate with Kathy directly through MyHealth. 
  4. New council member "folder" combined with Council resource page? – Ann (Jackie / Kriss)
    - see draft here: http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html
    - Clarify anyone, even with health issues, can attend or be a ACFAC member or guest (just via WebEx)
    - Contact Directory - Erika
        (Kriss still needs to contact interested parties to confirm they
        still want to receive our emails)
  5. Bio staff/doctor questions – Ed (Erika, etc) (review file: https://docs.google.com/leaf?id=0B7WrtjnOi5wMZTIwZmQzMDgtMWFjOS00ZGI4LTlmOTUtZmExNmI2MDcyMTIy&hl=en&authkey=CODQ1_8O
  6. Review council projects and CF center response – Kriss (Eric)
    - our projects can be found here to review: http://cfcenter.stanford.edu/acfac/council-projects.html
    - special thanks to founding members 
  7. ACFAC Website up: http://cfcenter.stanford.edu/acfac/
    - website revision manager Kriss for now, ok? (Kriss is remembering to update all files [including web files] with revision and date note. Plus "alternative therapies" note on return patient form.)
    - last chance this month for new member bios
    - last chance this month for website revisions
  8.  Bylaw revisions are holding for now
Set date/time for next meeting – Wednesday, May 18th, 2011

___________________________________
To attend this meeting via WebEx:

Meeting Number: 495 747 888
Meeting Password: april

To join the online meeting (now from mobile devices too):
1. Go to https://stanford.webex.com/stanford/j.php?ED=10409933&UID=30808823&PW=NNzgzMWFjZWRm&RT=MiM0
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: april
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: 495 747 888.
    Posted by at No comments:

    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.

    Posted by at No comments:

    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.
    Posted by at No comments:

    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

    Posted by at No comments:

    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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