9-21-2011 Minutes

9-21-2011 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 9/21/2011 Present: Council Members: Colleen Dunn, Laura Steuer, Ann Robinson, Kriss Benson, Erika Harrington, Lauren Caltron, Jay Archibald, Elyse Elconin-Goldberg, Jackie Rotier, Ed Kinney. Guests: Zoe Davies, Arthur Yang, Renetta Robinson, Jocelyn Villaruz, Dr. Paul Mohabir Absent: Caleigh Haber, Lizeth Haber, Dave Cartnal 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: Jocelyn Villaruz, the new Chest Clinic Manager was introduced. Her contact info follows: 300 Pasteur Dr., Room A100 Stanford, CA 94305 t: (650) 725-6412 c: (650) 888-3161 jvillaruz@stanfordmed.org The recording of our meetings was discussed at length, voted and passed that the recording will no longer be attatched to the ACFAC minutes. A Stanford CF adult newsletter was proposed. The council talked about this, Laura Steuer has volunteered to write a column for the next newsletter when the time comes. The council likes the idea of having a column and reaching out to the CF community. Our quarterly meeting with Dr. Weill and Dr. Mohabir was discussed at length and ultimately decided that these meetings should be as needed rather than quarterly, less informal. Laura Steuer presented her findings on physician variability vs. individual doctoring. I will attach her findings. In the long run, her results concluded that it didn't really matter between physician variability vs. individual doctoring. However, it did bring up new questions. ACFAC Website: http://cfcenter.stanford.edu/acfac/ -  Reminder to all: any files sent between council members must include filename and date footnote. See template (download only): https://docs.google.com/leaf?id=0B7WrtjnOi5wMYjE4YzAwMDYtNjk3My00Y2JhLTk4YWUtY2ZkZjYyYThjZTVm&hl=en_US - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting. - Kriss owes changes to: Help Us, Help You (port needle size plus month/year placed) - Laura: bylaw file (66% noted as attending at least 8 of the 12 meetings per year and election timing changed to January of each year). FYI: Cystic Fibrosis Caregivers Support Group is now fee free (donation requested) Tuesdays, starting July 5th 2011; 6:00 to 7:30pm The next council meeting has been scheduled for Wednesday October 19, 5-7pm. Closed Session: The council voted upon if we should enforce the attendance requirement wether or not it was an excused absence or not. After much discussion the council voted to enforce this. The council also talked about a new membership application that was received. The council discussed this breifly, voted and has decided to bring on a new member.

9-21-11 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 in person 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, September 21st, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room


INTRODUCTORY REMARKS

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/08/july-2011-minutes.html

COUNCIL BUSINESS

1. Introduce Jocelyn Villaruz, new Chest Clinic manager
2. Advising the CF Clinic
   -  update: researching physician variability vs. individual doctoring, statistics for patient outcomes – Laura
   - at our quarterly feedback meeting Dr. Mohabir discussed positive statistics for the current Stanford CF adult model – Dr. Mohabir  
3. Council meeting WebEx recording discussion 
4. Proposed Stanford CF adult specific newsletter?
5. Quarterly feedback meeting summary:
   We scheduled our next ACFAC feedback meeting for: Friday, December 9th
   ** How do we want to gather feedback for this December feedback meeting? 
   Summary of meeting:
   1. There were no revisions suggested to the "Get to Know the Stanford Adult CF Team" questionnaire (https://docs.google.com/leaf?id=0B7WrtjnOi5wMOGUyOWRkMTMtNTFjZS00ZDZjLWJiZTUtYjE4NjNlYTQ5NWU0&hl=en_US). It is being distributed to the whole CF team (docs, coordinators, NPs, dietician, etc.) in September with a deadline of October 10th.
   2. Dr. Sista is no longer with the Stanford CF team. The 3 remaining CF doctors will spend more time at clinic (clinic coverage time will not decline). Also, Dr. Mohabir and Dr. Weill still have room to add more one-on-one CF patients. If patients are interested, contact Kathy.
   3. The CF center's clinic feedback form is estimated to "launch" November 1st. Dr. Mohabir plans to show the advisory council a draft with the questions before then.
   4. Jay and I passed on that we are hearing more and more patients and family express relief that the "growing pains" are subsiding, and generally feeling more positive about the Adult CF Center at Stanford.
6. ACFAC Website: http://cfcenter.stanford.edu/acfac/
   -  Reminder to all: any files sent between council members must include filename and date footnote. See template (download only): https://docs.google.com/leaf?id=0B7WrtjnOi5wMYjE4YzAwMDYtNjk3My00Y2JhLTk4YWUtY2ZkZjYyYThjZTVm&hl=en_US
   - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
   - Kriss owes changes to: Help Us, Help You (port needle size plus month/year placed)
   - Laura: bylaw file (66% noted as attending at least 8 of the 12 meetings per year and election timing changed to January of each year)  
7. FYI: Cystic Fibrosis Caregivers Support Group is now fee free (donation requested)
   Tuesdays, starting July 5th 2011; 6:00 to 7:30pm
   See new Flyer with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZDQxM2RjMzUtYzA4YS00ZTE3LThhMzUtODJiNzgwMDI5NTNh&hl=en_US
8. Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action to close our meeting 
9. Set date/time for next meeting – October 19th, Wednesday at 5pm

• ACFAC CLOSED SESSION: voting and non-voting Advisory Council members, Advisory Council medical and staff advisors only.
   - Vote on new Membership application.     - Vote on attendance enforcement

___________________________________
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July 2011 Minutes

7-20-2011 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 7/20/2011 Present: Council Members: Colleen Dunn, Ann Robinson, Erika Harrington, Kriss Benson, Jay Archibald, Dave Cartnal, Ed Kinney, Jackie Rotier, Lizeth Haber, Elyse Elconin-Goldberg. Guests: Arthur Yang, Anna Modlin, Nerissa Del Rosario, Charlene Kell. Absent: Caleigh Haber, Laura Caltron, Laura Steuer 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. (Elyse Elconin-Goldberg was at our meeting in June). Council Business: Distribution of Hospital form "Help us, Help you" Nerissa Del Rosarion (Interim Patient Care Manager for B3/C3) asked a few nurses of their opinion and they would like to add to the list of questions the needle size of any port you may have as well as the month and year it was placed if possible. The council will revise the questionnaire to add these questions. The yearly Election of ACFAC Officers is scheduled for September in our bylaws (page 3). Colleen, Erika, and Kriss were elected December 15th, 2010. Laura was elected May 18th, 2011. The council discussed and voted that we should change the yearly election of officers in January and will be shown in the bylaws. The bylaws were discussed to reflect the change in attendance. An additional item was mentioned to go with the 66% attendance requirement. That was to note exactly how many meetings that would be (8 meetings/year). The council voted and passed these additions. Jay will post the revised bylaws onto our website. Zoe Davies wrote and requested updates (one short paragraph maximum) from the adult and pediatric advisory boards for the CF newsletter: How about something like this for our ACFAC? In the Adult CF Advisory Council's (ACFAC) first years, they've successfully encouraged the new Adult CF Center to start an Adult CF Support Group and created forms to give patients tools to communicate their medical routine and wishes to the CF team. The ACFAC asks that adult CF patients and their families contact the council and make use of this unique resource and avenue for direct communication. How to Contact the Stanford Adult CF Advisory Council: Website: http://cfcenter.stanford.edu/acfac/ Email: stanfordcfac@gmail.com Phone: (650) 549-5102  This paragraph was discussed at length. The council agreed that we would like to see our logo with this paragraph. The council also wanted to make a few changes to the paragraph to make is a bit more open to guests. The council voted and decided that whatever Kriss came up with would be fine. 5. Our August 2011 ACFAC Current Member list (13 members total): Note: A quorum is defined as 50% + 1 voting members. We have 12 voting members. So, at each meeting, we need at least 7 voting members present. Kriss (Chairperson) Laura (Vice Chairperson) Colleen (Membership Chairperson) Erika (Secretary) Ann Ed Jay Elyse Jackie Lauren Caleigh David Lizeth (non-voting member) Advising the CF Clinic Due to Laura's absence Erika was asked to give an update on Laura's research addressing physician variability vs. individual doctoring. To sum it all up she is making lots of progress and is looking forward to some of the results. An update on the progress of the CF feedback questionnaire at the clinic is that it will be launched August 1st. The bio staff/doctor questions were talked about and some changes were made and voted upon. The council also agreed that there should be a brief introduction on the questionnaire as well. It was voted upon that Dave will come up with a short little blurb. Current changes, including new member bios, should be up on the ACFAC Website soon. Our quarterly meeting with Dr. Weill and Dr. Mohabir is coming up. Jay and Kriss will be attending this meeting. The council briefly discussed the option of having the month of August off. This was voted upon and approved. FYI: New Cystic Fibrosis Caregivers Support Group Tuesdays, started July 5, 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 13. Next meeting is scheduled for *September 21, 2011; 5-7pm.*

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

INTRODUCTORY REMARKS

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/07/6-15-2011-minutes.html

COUNCIL BUSINESS

1. Distribution of Hospital form "Help us, Help you" – Nerissa (Interim Patient Care Manager for B3/C3)
     - revised and emailed to Eric (6/20) and will be updated on our website soon: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNTMwMjQyNTYtZjYxMy00MTQ4LTgwZTgtZTM0YTYzOWNkN2U5&hl=en_US  
2. The yearly Election of ACFAC Officers is scheduled for September in our bylaws (page 3).
   - Colleen, Erika, and Kriss were elected December 15th, 2010. Laura was elected May 18th, 2011.
   - Discuss how we want to handle election timing from here?
   - VOTE: do we change the bylaws?
3. Revised bylaws with attendance change and more. REVIEW FILE: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMMmJiMjlkYmQtMTg1MS00Yjc0LTlhZTgtMzBhNmNlZWQyYjg1&hl=en_US
   VOTE: to approve the new bylaws and post on ACFAC website?
4. Zoe Davies wrote and requested updates (one short paragraph maximum) from the adult and pediatric advisory boards for the CF newsletter:
   How about something like this for our ACFAC?
   

   In the Adult CF Advisory Council's (ACFAC) first years, they've successfully encouraged the new Adult CF Center to start an Adult CF Support Group and created forms to give patients tools to communicate their medical routine and wishes to the CF team. The ACFAC asks that adult CF patients and their families contact the council and make use of this unique resource and avenue for direct communication.
   How to Contact the Stanford Adult CF Advisory Council:
   Website: http://cfcenter.stanford.edu/acfac/
   Email: stanfordcfac@gmail.com
   Phone: (650) 549-5102 

   VOTE: approve this blurb for the CF newsletter?  
5. Our August 2011 ACFAC Current Member list (13 members total):
   Note: A quorum is defined as 50% + 1 voting members. We have 12 voting members. So, at each meeting, we need at least 7 voting members present.
   Kriss (Chairperson)
   Laura (Vice Chairperson)
   Colleen (Membership Chairperson)
   Erika (Secretary)
   Ann
   Ed
   Jay
   Elyse
   Jackie
   Lauren
   Caleigh
   David
   Lizeth (non-voting member)
6. Advising the CF Clinic
      -  update: research physician variability vs. individual doctoring, statistics for patient outcomes – Laura (Erika)
7. Reaching out to the whole Stanford Adult CF Population
       - update on progress with CF feedback questionnaire at clinic, August 1st?
8. Bio staff/doctor questions – Ed (Erika, etc) REVIEW FILE: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMOTY2MWNiNzEtN2JkNi00YjMxLWEwOTktNGRlZDQ1ZDE5OTQ0&hl=en_US
9. ACFAC Website:
   - Current changes, including new member bios, should be up soon
   - We discussed an appeal process for CF center patient decisions.
   What department/clinic did we want to include in the "helpful links" section of our ACFAC site? Stanford Patient Representation, Stanford Hospital Guest Services?
    - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
10. FYI: New Cystic Fibrosis Caregivers Support Group
     Tuesdays, started 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, August 17th, 2011

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To attend this meeting via WebEx: 

Topic: July CF MTG 
Date: Wednesday, July 20, 2011 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 801 638 458 
Meeting Password: july 

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To join the audio conference only 
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Call-in toll-free number (US/Canada): 1-877-669-3239 
Call-in toll number (US/Canada): +1-408-600-3600 
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Access code:801 638 458 

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: 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. Renetta is pleased to introduce the New Advanced Lung Disease Clinic starting June 20, 2011 located on the first floor in Room A175. 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. 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. Member anniversary dates were given to Erika. 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. The bio staff/doctor questions will be revised and the number of questions will be shortened to returned to the meeting in July. 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. 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. 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.

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

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/06/5-18-2011-minutes.html

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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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: All council members introduced themselves for the benefit of those using remote attendance methods. 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. Minutes from previous meeting were approved. 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: The topic of attending physicians came up should you be admitted. Recommendations were made by both council members and Stanford staff. Quarterly meeting with Dr. Weill: a. summary document here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNmZiM2FjNDgtNDNhYy00ZmI1LWE0ZDctZTQ2OTQ1ZWM1YjJk&hl=en&authkey=CIOFre0J 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. 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. 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. 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. 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. Laura Steuer volunteered for the Vice Chairperson position. The council voted and approved of this. Old Business: 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. 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. 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. 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. 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. ACFAC Website up: http://cfcenter.stanford.edu/acfac/ Jay Archibald volunteered and was voted in by council to be the new Website Revision Manager. Kriss Benson will update Jay on this position. Bylaw revisions are holding for now and Laura Steuer will update any changes that will be necessary. 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. The next meeting is scheduled for Wednesday, June 15, 2011.