Wednesday, July 6, 2011

6-15-2011 Minutes

6-15-2011 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 6/15/2011


Present:


Council Members: Lindsey Martins, Colleen Dunn, Ann Robinson, Erika Harrington, Kriss Benson, Jay Archibald, Dave Cartnal, Ed Kinney, Jackie Rotier, Laura Steuer, Lizeth Haber.


Guests: Danny Altano, Renetta Roberson, Dr. Paul Mohabir, Eric Williams.


Absent: Caleigh Haber, Laura Caltron


This months' meeting was NOT recorded unfortunately.


Introductory Remarks:


  • All council members introduced themselves for the benefit of those using remote attendance methods.

  • Guests introduced themselves.

  • Minutes from the previous meeting were approved.


Council Business:

  1. The council attendance was discussed at length. It was voted upon and passed that each member is responsible for noting any errors in their attendance on each of the meeting minutes. It was also voted upon by council that there will now be 5 missed meetings allowed. Kriss and Laura will revise the bylaws to reflect this decision.

  2. Renetta is pleased to introduce the New Advanced Lung Disease Clinic starting June 20, 2011 located on the first floor in Room A175.

  3. Kriss and Jay will be adding the Stanford Patient Relations page to our website to help assist any patients to help with an appeal process.

  4. Colleen and Dr. Mohabir said that the CF feedback questionnaire was approved by the CF Adult Team. It will be distributed starting July 1st or August 1st and will run for a 3 month trial.

  5. Member anniversary dates were given to Erika.

  6. The new council member "folder" is now combined with the Council resource page and has been approved by the council. Massage services will be added to the website for inpatients. Kriss will send the revised file to Eric.

  7. The bio staff/doctor questions will be revised and the number of questions will be shortened to returned to the meeting in July.

  8. The ACFAC website is up and new member bios will be added shortly. As a reminder, please submit all changes to Jay for June edits.

  9. It was announced that Rudy will no longer be the nurse manager for inpatients. Eric will get together with Rudy and Nerissa (the new nurse manager) to discuss the distribution of the "Help Us, Help You" form.

  10. FYI: New Cystic Fibrosis Caregivers Support Group

    Tuesdays, starting July 5, 2011; 6-7:30pm

    See Flier with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYjFmZWZhYjUtOTA5Ny00NGNkLWIwMzAtNjY4NDI1MDkxNzI5&hl=en_US&authkey=CJap8F4

Next meeting is scheduled for Wednesday, July 20, 2011, 5-7pm.

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Tuesday, June 7, 2011

6-15-2011 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, June 15th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS
COUNCIL BUSINESS
  1. Council Attendance
    VOTE: Each member responsible for flagging any errors in their attendance notation on each meeting minutes? In other words, when the previous month's meeting minutes are approved without objection, we are all approving the attendance listed at the top is indeed accurate?
    VOTE: Allow "excused absences"?
    If so, how many are allowed in a year? Does an excused absence require a certain amount of notice (hours or days before meeting)? Does an excused absence require voting instructions in writing (so the absence will not affect our ability to accomplish things and vote)?
  2. Introducing, New Advanced Lung Disease Clinic – Renetta
    - starting June 20th, 2011
    - location 1st floor Rm. A175 
  3. Advising the CF Clinic
     -  update: research team doctoring vs. individual doctoring, statistics for patient outcomes – Laura
     -  review: appeal process for CF center patient decisions – Ann
  4. Reaching out to the whole Stanford Adult CF Population
      - update on progress with CF feedback questionnaire at clinic  – Meg (Colleen, Renetta)
     - add question about "why don't you attend CF events? (ie timing, not informed, not enough notice, not interested in topic, etc.) 
  5. Update: Member anniversary date – Erika
  6. New council member "folder" combined with Council resource page – Completed
     - see new link on right side of this meeting blog   -->
     - and find the page here: http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html
  7. Bio staff/doctor questions – Ed (Erika, etc) (review file: https://docs.google.com/leaf?id=0B7WrtjnOi5wMZmVjNmUxZDYtMDY5Ni00MjJkLTgxMWUtZTFlZWI4MWU1NDFj&hl=en_US&authkey=CMb46ZoF)
  8. ACFAC Website up:
     - all members please re-proof at: http://cfcenter.stanford.edu/acfac/
    - new member bios will be added soon
    - website revision manager is Jay. Please submit changes to Jay for June edits.
  9. Distribution of Hospital form "Help us, Help you" – Eric (Rudy)
    - posted and available here (2nd bullet): http://cfcenter.stanford.edu/acfac/links.html
    - note: Kriss still needs to add massage question and form URL note to online form files 
  10. Bylaw revisions - Laura 
  11. FYI: New Cystic Fibrosis Caregivers Support Group
    Tuesdays, starting July 5th 2011; 6:00 to 7:30pm
    See Flyer with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYjFmZWZhYjUtOTA5Ny00NGNkLWIwMzAtNjY4NDI1MDkxNzI5&hl=en_US&authkey=CJap8F4
Set date/time for next meeting – Wednesday, July 20th, 2011

___________________________________
To attend this meeting via WebEx:
To join the online meeting (Now from mobile devices!)
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3. If a password is required, enter the meeting password: june
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To join the audio conference only
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Access code:800 570 254  
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Sunday, June 5, 2011

5-18-2011 Minutes

5-18-2011 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 5/18/2011

Present:
Council Members: Ed Kinney, Erika Harrington, Kriss Benson, Ann Robinson, Jackie Rotier, Lauren Catron, Jay Archibald, Lindsey Martins, Colleen Dunn, Elyse Elconin-Goldberg, Dave Cartnal, Laura Steuer.

Guests: Zoe Davies, Rosie Flores, Dr. David Weill, Arthur Yang, Rudy Arthofer, Sydney Altano, Sheena Stuart, Charlene Kell, Renetta Roberson, Eric Williams.

Absent:
Lizeth Haber, Caleigh Haber


Introductory Remarks:
  1. All council members introduced themselves for the benefit of those using remote attendance methods.
  2. Guests also introduced themselves.
    Sheena Stewart the Director of Development at the Cystic Fibrosis Foundation Northern California - South Bay introduced herself and made a brief statement as to what the CFF does locally.
  3. Minutes from previous meeting were approved.
  4. A Brief word from Dr. Weill:
    Dr. Weill, along with the rest of the CF team, thought there was a lot of criticism towards the CF team and Transplant team after Lori Kipp's passing. The CF team was quite angry with negative behaviors towards them. There are several ways to get patient concerns to the CF team. If you would like a second opinion, don't hesitate to ask. Kathy Gessley is the best person to talk to about this subject. The CF team is accustomed to hearing their patients ask for a second opinion, it's a part of working in the medical industry.


New Business:
  1. The topic of attending physicians came up should you be admitted. Recommendations were made by both council members and Stanford staff.
  2. Important note from Dr. Weill:
    As a council, we can help get the positive word out about the new adult CF center, and the whole CF medical staff's caring intentions. Probably one of the biggest concerns the team had about our previous feedback was this "fear of retribution". The CF medical team wants our input, values this input, and cares about every patient. As much as possible, they want adult CF patients to know all that, and never fear working together constructively.
    The topic of who would like to go to these quarterly meetings was discussed and decided upon that a CF council member should be attending these as a priority. The current ACFAC chairperson will always attend and the second person will be based upon volunteering and ultimately up to the chairperson.
  3. Staying positive:
    The council discussed how we need to stay positive about all of its accomplishments. Our projects can be found here to review: http://cfcenter.stanford.edu/acfac/council-projects.html In addition, CF patients do have the opportunity to see only one doctor. Also, the CF team is working with the ACFAC and progress is being made.
    The ACFAC made a special thanks to those founding members.
  4. The Pediatric Advisory Council has a new website: http://cfcenter.stanford.edu/pediatric-advisory-board/ . They would also like to make it clear that they are against physician variability.
  5. Advising the CF Clinic:
    The topic of physician variability vs. individual doctoring was discussed at length. Laura Steuer found out that with other health issues, if you see one doctor vs. a variety, compliance goes up. She is unsure if that's the same with CF patients. The council voted that Laura should research this topic more and get back to the council. Due to Dave Cartnal's employment he has some information on this topic that he will pass along to Laura.
    The appeal process for the CF clinic was brought up and discussed. If you ever want a second opinion please feel free to do so. The best person to contact is Kathy Gessley. It was brought up that nurses are an excellent advocate for their patients along with their social worker.
  6. Reaching out to the whole Stanford Adult CF Population:
    Meg Dvorak will send Dr. Weill the CF questionnaire form once she returns from vacation.
    Having a Facebook presence for ACFAC events was brought up and discussed. Once again the council thought this would NOT be a wise idea due to negative remarks on Facebook. The council would like to see however that the next Town Hall Meeting be advertised better.
  7. Laura Steuer volunteered for the Vice Chairperson position. The council voted and approved of this.
Old Business:
  1. Member Anniversary Date:
    The anniversary date for each ACFAC member was brought up so that when their 2 year term is up the council is aware and if that member would like to continue for another term the council discussed and voted that a simple majority from the ACFAC is sufficient enough to reinstate that member. All members will send their anniversary date to Erika Harrington, the ACAFC secretary. Also, the council voted upon and passed that the absentee year will begin at the start beginning of each calendar year.
  2. Update on approval for council sign up sheet at the CF Clinic's front desk:
    Eric Williams needs to know that any patient information the council receives is located in a secure location. Kriss Benson confirmed that it is in a safe location and will send Eric this information.
  3. Update on MyHealth issues:
    The CF clinic does not appear as a point of contact at all for some CF patients through MyHealth. Note: Patients seeing this problem should call: 650-723-3333.
    There is no clear path to communicate with Kathy Gessley directly through MyHealth. Note: MyHealth is intended for contact with physicians only. Therefore, there will be no direct path to communicate with Kathy.
  4. The new council member "folder" has been combined with the council resource page and can be found here: http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html
    The council would like to make it clear that everyone is welcome to our meetings. If you cannot make it in person you can also join by calling in or using WebEx.
    The ACFAC contact list is currently getting updated by Erika Harrington. Kriss Benson still needs to contact interested parties to confirm they still want to receive our emails.
  5. Bio staff/doctor questions:
    Ed and the rest of this committee will be revising the list that they have come up with and will present this new list at the next meeting.
  6. Jay Archibald volunteered and was voted in by council to be the new Website Revision Manager. Kriss Benson will update Jay on this position.
  7. Bylaw revisions are holding for now and Laura Steuer will update any changes that will be necessary.
  8. Distribution of Hospital form "Help us, Help you":
    Eric Williams will get together with Rudy Arthofer and figure out the best way to distribute this flier. Some council members thought that have a CF corner in the clinic would be a great place to advertise this flier along with ACFAC business cards, CF clinic business cards and other important CF information.
  9. The next meeting is scheduled for Wednesday, June 15, 2011.
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Friday, May 13, 2011

5-18-2011 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, May 18th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS
NEW BUSINESS 
  1. Quarterly meeting with Dr. Weill summary - Kriss (Erika)
     a. summary document here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNmZiM2FjNDgtNDNhYy00ZmI1LWE0ZDctZTQ2OTQ1ZWM1YjJk&hl=en&authkey=CIOFre0J
    b. Important note from Dr. Weill:
    As a council, we can help get the positive word out about the new adult CF center, and the whole CF medical staff's caring intentions. Probably one of the biggest concerns the team had about our previous feedback was this "fear of retribution". The CF medical team wants our input, values this input, and cares about every patient. As much as possible, they want adult CF patients to know all that, and never fear working together constructively.
     c. Who would like to represent us going forward at these quarterly meetings? vote on how to select 2 council members each quarter
  2. Staying Positive
    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
  3. Pediatric advisory meeting summary – Kriss
    - their new website: http://cfcenter.stanford.edu/pediatric-advisory-board/
  4. Advising the CF Clinic
    -  research team doctoring vs. individual doctoring, statistics for patient outcomes – Laura
    - appeal process for CF center patient decisions – Ann
  5. Reaching out to the whole Stanford Adult CF Population
    - CF feedback questionnaire at clinic  – Colleen, Meg, Renetta
    on hold pending Meg's return
    - Event page on Facebook for our ACFAC meetings? – Sydney 
  6. Elect new council Vice-Chairperson

OLD BUSINESS
  1. Member anniversary date and Council attendance – Erika, Colleen
  2. Update on approval for council sign up sheet at the CF clinic front desk – Eric
  3. Update on reported MyHealth issues - Charlene, Renetta
     - The CF clinic does not appear as a point of contact at all for some CF patients through MyHealth.  Note: Patients seeing this problem should call: 650-723-3333
     - There is no clear path to communicate with Kathy directly through MyHealth. Note: MyHealth is intended for contact with physicians only. Therefore, there will be no direct path to communicate with Kathy.
  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: 
  6. ACFAC Website up: http://cfcenter.stanford.edu/acfac/
     - website revision manager?
    (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
  7.  Bylaw revisions are holding for now, who would like to pick these up?
  8. 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?
    - note: Kriss still needs to add massage question and form URL note to online form files 
Set date/time for next meeting – Wednesday, June 15th, 2011

___________________________________
To attend this meeting via WebEx:

Meeting Number: 496 452 396
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: may
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: 496 452 396.
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Friday, May 6, 2011

4-20-2011 Minutes

4-20-2011 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 4/20/2011


Present:

Council Members: Norma Kipp, Erika Harrington, Kriss Benson, Ann Robinson, Jackie Rotier, Lauren Catron, Jay Archibald, Lindsey Martins, Colleen Dunn, Elyse Elconin-Goldberg, Dave Cartnal.


Guests: Zoe Davies, Meg Devorak, Rosie Flores, Bill Kipp, Dr. Paul Mohabir, Kim Schlotterbeck, Sarah Della Maggiore, Joan Forte, Charlene Kell, Renetta Roberson


Absent:

Lizeth Haber, Caleigh Haber, Ed Kinney, Laura Steuer


*Note: This month's meeting was not recorded due to technical difficulties.




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.



New Business:

  1. The patient experience at the CF clinic was discussed from those who have be to the clinic within the past month. Positive and productive comments were made about their visit and the return patient form.

  • Renetta brought in the filled out flyers from clinic. No comments were made on these forms. Kriss will get in contact with those who left their contact info.

  1. The council asked some of the CF clinic staff how the Return Patient Form was being accepted from their perspective. Positive remarks were made from the staff.

  • The council discussed and came up with several questions and comments that Kriss and Erika will bring up at the ACFAC quarterly meeting with Dr. Weill. They will return to the next council meeting with the results.

  • The council talked about who should attend these quarterly meetings with Dr. Weill. The idea of having another CF clinic staff member attend as well was brought up. After a brief discussion it was voted upon and passed. Some of the council members still thought it was a good idea to ask Dr. Weill what his thoughts were about this. Kriss will send an e-mail to Dr. Weill to get his input.

  1. The council brainstormed some ideas to get better communication from the whole Stanford CF Adult population. Sending out another survey to Adult CF patients was brought up to aid in the communication between patients and CF staff as one possible way. Another suggestion was to have "A Picnic in the Park" Day for CF patients only.

  1. Norma Kipp announced her resignation from the ACFAC.

  2. A private remembering of Lori Kipp was held from this point until the end of the meeting.

  3. The items that were not discussed at this month's meeting will be discussed next time.

  • The next ACFAC meeting has been scheduled for Wednesday, May 18th, 2011.

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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.

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