12-21-2011 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 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
Date/Time: Wednesday, December 21, 2011, 5:00pm-7:00pm
Location: none

Note: this is an informational agenda; we are not holding a meeting.

INTRODUCTORY REMARKS

Note: this is an informational agenda; we are not holding a meeting.  Please read the agenda. 

COUNCIL BUSINESS

1.   Council chairperson: Interim Chair Laura - Welcome & happy holidays. Now keep reading! 

2.   January elections:  All officers, please think if you wish to remain in your position.  All members, please review the officer roles in the council bylaws, and give serious thought about which roles you may be able to fill.  Our council needs active membership and leadership in order to continue to exist.   

3.   CF center website (http://cfcenter.stanford.edu):

·          "Get To Know the Team" questionnaire:  Colleen has distributed the questionnaire to the CF team; Lara and Meg have responded. 

·          Adult CF center website tab:  Colleen has collated the ideas from our brainstorming session, and noted individuals who might be able to write each section; review the document at https://docs.google.com/open?id=0B7WrtjnOi5wMNzE2YjQ2ZjQtMzllYy00MjM1LThiOTMtMmEwZmQ3YTU4NDg1

4.   Mentor program: Lauren has revised and updated the mentor questionnaire for potential mentors; review the document at https://docs.google.com/open?id=0B7WrtjnOi5wMNmUwNDg3OTMtMzE2Yi00Y2M1LWIzZDYtOWJlZDI0ZjY5ODJl

5.   Clinic communication:  Eric W. has contacted Kathy regarding providing patients with hard copy information regarding what follow up tests, medications, etc. are required at the end of each visit. He will present this information at the January meeting.

6.    Set date/time for next meeting: January 18, 2012 , Wednesday at 5pm

To attend this meeting via WebEx:
Note: this is an informational agenda; we are not holding a December meeting.  Please read the above agenda to prepare for January's meeting.

November 2011 Minutes

11-16-2011 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 9/21/2011 Present: Council Members: Colleen Dunn, Laura Steuer, Ann Robinson, Kriss Benson, Erika Harrington, Lauren Caltron, Jay Archibald, Eric Marten, Ed Kinney. Guests: Zoe Davies, Dr. Paul Mohabir, Siri Vaeth (member of the CF Parent Advisory Council) Absent: Lizeth Haber, Dave Cartnal, Jackie Rotier, Elyse Elconin-Goldberg Introductory Remarks: All council me Council Business: From the Pedia CF Advisory Council Meeting Minutes 11-16-11 Present: Council Members: Colleen Dunn, Ann Robinson, Kriss Benson, Erika Harrington, Laura Steuer, Ed Kinney, Eric Marten, Jay Archibald, Lauren Caltron, Elyse Elconin-Goldberg, Jackie Rotier. Guests: Arthur Yang, Zoe Davies, Dr. Paul Mohabir Absent: Lizeth Haber 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: Kriss Benson has stepped down as Council Chairperson. Tonight's meeting will be her last as Chair. Laura Steuer volunteered and was voted in as our temporary Chairperson through February. Kriss will co-chair to assist Laura as she learns this position. Conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election were talked about briefly. Some council members showed possible interest in officer positions that will be available in February. All members have been asked to read the bylaws before our January meeting to get a better idea of what each role is in charge of. ACFAC Website: http://cfcenter.stanford.edu/acfac/ Update 2: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th). Add a new Adult tab on the CF center website? Review: http://cfcenter.stanford.edu Suggestions for what would be in this new Adult tab: a. note from last meeting: "How adult CF clinic works" b. note from last meeting: "Your Adult Doctor Choices" c. note from last meeting: "How To Call In Sick" d. note from last meeting: adult mentor program page or blurb e. discussion of each council member's brainstorming on this topic -Each member made their suggestions. Colleen sent out an e-mail listing all of the ideas the members came up with. Mentor Program discussion and suggestions - form for potential mentors (review file: coming soon) Laura will send the mentor questionnaireto Dr. Mohabir to review with Meg Devorak. Council concerns and open discussion period: -Lauren and Kriss will prepare "What to bring to the hospital" list for the adult CF website tab and give to Colleen. -Laura will connect with Eric Williams regarding WebEx info for January 2012 meeting. -Eric will look into the issue of unified communication from the clinic: who writes up all the info from the varied team members after an app't to give to the patient? -Reminder: All members need to send the Chair a copy of any presentations to be made at subsequent meeting (powerpoint, visuals, forms to be passed out, etc) for inclusion in Agenda for Webex viewers. Please note: Adult CF Support Group is on 12/2 with a new start time at 11:30am (new 1.5 hour meetings) The council will NOT have a council meeting in December. Instead an update will be sent to everyone via e-mail.

11-16-2011 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 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, November 16th, 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: 

COUNCIL BUSINESS

1. Council Chairperson - Fill position permanently now? Interim Chairperson? Skip December? - Kriss
2. Conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election. Officers please think about if you want to ask to remain in your position. Members please give real thought to if you want to consider an officer position and any questions you might have about each position. - Laura
3. ACFAC Website: http://cfcenter.stanford.edu/acfac/
   - Update 2: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th).  
4. Discussion: Ask to add a new Adult tab on the CF center website?
   Review: http://cfcenter.stanford.edu
   Suggestions for what would be in this new Adult tab:
   a. note from last meeting: “How adult CF clinic works”
   b. note from last meeting: “Your Adult Doctor Choices”
   c. note from last meeting: “How To Call In Sick”
   d. note from last meeting: adult mentor program page or blurb
   e. discussion of each council member's brainstorming on this topic
5. Mentor Program discussion and suggestions - Lauren
   - form for potential mentors (review file: coming soon)
6. Council concerns and open discussion period
   Please note: Adult CF Support Group is on 12/2 with a new start time at 11:30am (new 1.5 hour meetings)
7. To close our meeting, Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action 
8. Set date/time for next meeting – **Discuss December 21st, Wednesday at 5pm

___________________________________
To attend this meeting via WebEx: 
Topic: CF Mtg - November 
Date: Wednesday, November 16, 2011 
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Meeting Number: 806 703 515 
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October 2011 Minutes

10-19-2011 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 9/21/2011 Present: Council Members: Colleen Dunn, Laura Steuer, Ann Robinson, Kriss Benson, Erika Harrington, Lauren Caltron, Jay Archibald, Eric Marten, Ed Kinney. Guests: Zoe Davies, Dr. Paul Mohabir, Siri Vaeth (member of the CF Parent Advisory Council) Absent: Lizeth Haber, Dave Cartnal, Jackie Rotier, Elyse Elconin-Goldberg 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.Date/time for next meeting – November 16th, Wednesday at 5pm Council Business: From the Pediatric council meeting in September: Is there enough priority on adult content on CF center site? http://cfcenter.stanford.edu/ . The council talked about this and decided to brainstorm some ideas and bring them to our next meeting. WebEx meeting video and voice recording links removed from online meeting blog. Our council secretary will always have a file with links to our recordings. Erika will pass on this info to the next ACFAC secretary. Reminder that a conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election is planned for our November council meeting. Officers please think about if you want to ask to remain in your position. Members please give real thought to if you want to consider an officer position and any questions you might have about each position. ACFAC Website:http://cfcenter.stanford.edu/acfac/ -Update:"Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th). - Parking note and Council template is on our resource page now. Our resource page link:http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html -Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting. Discussion: Each council member brainstormed 2 questions to add to Adult CF in-clinic survey for any new versions that may be created in the future (if the first version form is a success). I will attach a link to view all of the questions that the council came up with. Later on we will narrow down the list. Discussion: Each member to brainstorm ideas to encourage adults to show up to adult CF clinic at least quarterly. Also, brainstorm how to inform or raise awareness of the choice adult CF patients have to be followed by one doctor (reminder, these requests are made through Kathy). I will attach a link to some of the ideas the council came up with. Eric M. briefly summarized "CFRI LIVE - Successful Transition: Ride With Us" (presented by Kathy Gesley). The CFRI presentation is here: http://www.ustream.tv/recorded/17823167 Date/time for next meeting – November 16th, Wednesday at 5pm

10-19-2011 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 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, October 19th, 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/2011/10/9-21-2011-minutes.html

COUNCIL BUSINESS

1. Discussion: Each council member brainstormed 2 questions to add to Adult CF in-clinic survey for any new versions that may be created in the future (if the first version form is a success). 
2. Discussion: Each member to brainstorm ideas to encourage adults to show up to adult CF clinic at least quarterly.
   Also, brainstorm how to inform or raise awareness of the choice adult CF patients have to be followed by one doctor (reminder, these requests are made through Kathy).
3. ACFAC Website: http://cfcenter.stanford.edu/acfac/
   - Update: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th). 
   -  Parking note and Council template is on our resource page now. Our resource page link: http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html  
   - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
4. Eric M. will summarize "CFRI LIVE - Successful Transition: Ride With Us" (presented by Kathy Gesley). Transition is a topic that commonly comes up when our representative (currently Chairperson, Kriss) meets with the pediatric council. The CFRI presentation is recorded here: http://www.ustream.tv/recorded/17823167
5. From the Pediatric council meeting in September: Is there enough priority on adult content on CF center site? http://cfcenter.stanford.edu/
6. WebEx meeting video and voice recording links removed from online meeting blog. Our council secretary will always have a file with links to our recordings.
   Are these recordings searchable or discoverable?
   Should they be password protected? 
7. Reminder that a conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election is planned for our November council meeting. Officers please think about if you want to ask to remain in your position. Members please give real thought to if you want to consider an officer position and any questions you might have about each position.
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 – November 16th, Wednesday at 5pm

___________________________________
To attend this meeting via WebEx: 
Meeting Number: 808 133 886 
Meeting Password: october 

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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.