9-18-13 meeting minutes

Members Present: Laura S.,Ann R.,Brian E.,Richard D.,Angel M., Amber R., Colleen. Minutes taken by Colleen in temporary absence of secretary.

Members Absent: Jackie R., Brian T., Elyse G., Ed K., Jay A.

Guests Present: None

Council Votes: August minutes approved, voted on and adopted.

                         The council voted to NOT hold the December 2013 meeting.

Tasks Assigned: None

Project Updates:

Facebook update from Brian E.: Our page should be functional within 2 weeks! Monitoring of the page was discussed: Meg feels she isn’t able to monitor the page every day. Our Stanford contact Liat Kobza would like our council help with monitoring of the page by checking in on the page daily. Brian T. has already agreed to log in each day. When he is unavailable both Brian and Amber are most generally on line and happy to do so. Additionally, Liat would like all members to login 1-2/week to keep the page “Active”.

CFRDM card update from Laura: The cards are nearly final. When ready, Laura will have them printed.  

Other: Upcoming meeting dates

 November 20, 2013.

(December - the December meeting has been cancelled)

 January 15, 2014.

Action Items : 1. Laura to contact Dr. Mohabir within 2 weeks to discuss the initiation of our clinic vision. Amber and Brian E. will continue thereafter as council’s liaisons to the clinic for ongoing work on the project.

 2. All officers should be prepared to share whether they plan to remain on the council for another term or to resign their position at the November meeting. Council voting on new positions will occur in January.

3. Brian. E will follow up with Liat regarding:

·         What expectations does Liat have of our group when “monitoring” the FaceBook page.

·         What is the course of action should we see something marginal/inappropriate.

·         Check if council can be granted “administrator rights” (Brian E and Amber R.

are both willing to become administrators)

Closed session was held; discussion of ACFAC document synthesizing large strategic goals/vision with specific tactical ideas and tasks.

Meeting called to a close at 6:05pm.

Next meeting: October 16, 2013

9-22-13 ACFAC Agenda

Anyone calling in needs to do so AHEAD of time. Call-in or WebEx members should get set up 10 minutes before the scheduled meeting time.  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.

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. 

Only one individual with CF may be present in the Blake Wilbur meeting room; this guideline holds for all CF adults regardless of culture status, MRSA, b. cepacia, and so forth. Contact the chairperson Laura Steuer for further information.

Please have your own copy of the agenda and attachments with you during the meeting.

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, Sept 18, 2013, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room & Webex

Open Session

1)      Introductions & meeting guidelines (5:00 – 5:05)

·         Temporary secretary (Colleen)

2)    Adopt August minutes (5:05 – 5:10)

·         Review minutes at http://cfacmeetings.blogspot.com/2013/09/8-21-13-meeting-minutes.html

3)    ACFAC / CF Center partnership projects (5:10 – 5:20)

·         Current project: “Supporting newly-diagnosed CFRD adults”

·         Facebook page: update from FB developer and launch date (Brian E.)

4)    Quick Updates (5:20 – 5:35)

·         November-January meeting calendar (Laura)

Closed session

5)    ACFAC vision project (5:35 – 6:20)

·         Review document at https://docs.google.com/file/d/0B7WrtjnOi5wMOGVYZFhCWjBlOW8/edit?usp=sharing 

6)    Readout of Action Items (6:20 – 6:30) (Richard)

7)      Next meeting: Wednesday, October 16, 5:00pm-7:00pm

To attend this meeting via Webex:

Topic: CF Meeting -September 2013
Date: Wednesday, September 18, 2013
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00)
Meeting Number: 804 897 694
Meeting Password: Wel2010come


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8-21-13 Meeting Minutes

ACFAC Meeting Minutes – August 21st, 2013               

Members Present: Ann, Jackie, Ed, Laura, Amber, Elyse, Angel, Brian E., Colleen, Brian T., Richard, Jay

Guests Present: Karen

Members Absent: N/A

1. July 2013 minutes approved.
2. Laura and Angel spoke with clinic staff regarding the CFRD resource card.  Endocrine dept. recommended adding several websites that patients have found useful.  Lara recommended to not include diabetes educators contact information as they may not have to capacity to handle an influx of calls. It was recommended to include the main endocrine dept. contact number.  In clinic, Kathy and/or Meg would be the most likely to hand out the card.
3. Brian E. has been in contact with web developer for the private Facebook page.   It has been recommended by the developer to initially open it up to all patients, regardless of CFRD status, as that will increase the traffic.  Once page is established, CFRD can be a focus.  The development should take a couple of weeks once the process begins.  Meg will still act as gatekeeper / moderator for the page, and the page would only be able to be accessed once invited via a web link from the moderator.   Council members will take turns checking in to help initially create traffic, and Brian T. has volunteered to be a permanent "commentator" with the goal of keeping interest in the page.
4. Temporary "minute-takers" established, Colleen to take minutes for September and November and Jay to take minutes for October.  They will only be responsible for typing up minutes and sending them to Laura, who has agreed to post to the ACFAC site as well as distribute the email.
5. Closed session held to discuss future council vision and anecdotal research obtained.
6. Next meeting set for Wednesday, September 18^th from 5pm-7pm.

 Action Items

1. Laura: To finalize CFRD resource card and present for final feedback
2. Brian E.: To notify all council members when CFRD Facebook page goes live
3. All: Review data and vision plan to prepare for email train

8-21-13 Agenda

Anyone calling in needs to do so AHEAD of time. Call-in or WebEx members should get set up 10 minutes before the scheduled meeting time.  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.

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. 

Only one individual with CF may be present in the Blake Wilbur meeting room; this guideline holds for all CF adults regardless of culture status, MRSA, b. cepacia, and so forth. Contact the chairperson Laura Steuer for further information.

Please have your own copy of the agenda and attachments with you during the meeting.

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, July 17, 2013, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room & Webex

Open Session

1.      Introductions & meeting guidelines (5:00 – 5:05)

2.      Adopt July minutes (5:05 – 5:10)

·         Read minutes at  http://cfacmeetings.blogspot.com/2013/08/acfac-7-17-13-meeting-minutes.html

3.      ACFAC / CF Center partnership projects (5:10 – 5:40)

Current project: “Supporting newly-diagnosed CFRD adults”

·                CFRD resource card: feedback from endocrine team and CF nutritionist (Angel, Laura)

·                Social Media/FB page: update from FB developer; process for page invitation/access (Brian E.)

4.      Quick Updates (5:40 – 5:55)

·         Temp secretary assignments (Jackie)

Closed session

5.      ACFAC goals (6:00 – 6:40)

·         Anecdotal research from patients and clinics; read  https://docs.google.com/file/d/0B7WrtjnOi5wMRjA2ZmpWRlFwWDA/edit?usp=sharing (Amber and Angel)

·         Potential council vision/plan; read  https://docs.google.com/file/d/0B7WrtjnOi5wMMVBORmlnSmhBQlE/edit?usp=sharing (Brian E. and Laura)

6.      Readout of Action Items (6:40 – 6:45) (Richard)

7.      Next meeting: Wednesday, September 18, 5:00pm-7:00pm

#######

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Topic: CF Meeting- August 2013 
Date: Wednesday, August 21, 2013 
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Meeting Number: 809 236 000 
Meeting Password: Wel2010come 


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ACFAC 7-17-13 Meeting Minutes

Members Present: Angel, Brian E., Elyse, Laura, Jay, Ann, Jackie, Richard, Amber, Ed

Guests Present: Sarnjit, Karrie

Members Absent: Brian T., Colleen

1. June 2013 minutes approved.
2. Discussion held regarding the pocket-sized information card for the CFRD project.  Recommendations included to allow space for notes and to make it business card size and possibly double sided. 
3. Brian E. spoke with Meg regarding the CFRD private Facebook page, and the recommendations from the council from the May meeting.  Brian's goal is to speak directly with the web developer who is the person in charge of designing and implementing the page.  
4. Richard is working on paragraph for CFRD private Facebook page, may need to be reworded depending on the purpose of the paragraph and who it can be view by (i.e. people who are already members of the page, or anyone looking to join the page)
5. Elyse provided an update of the Peer2Peer program with no major changes to report.  Plans are in the works for another training session and additional mentors are needed, timeline and specifics to follow.
6. Jackie is still looking for a volunteer minutes-taker for October.
7. Closed session held to discuss future council goals/direction.
8. Next meeting set for Wednesday, August 21^st from 5pm-7pm.

 Action Items

1. Laura: To adjust/change the CFRD information card / bookmark
2. Brian E.: To get in contact with website developer for private CFRD Facebook page, and to address logistics of how patients will be invited to the page
3. All: To get in contact with other CF patients to get information about how other CF clinics are organized. Report findings to Angel and Amber who will synthesize for next meeting.
4. Angel and Laura: To ask endocrine clinic feedback on CFRD resource card.

 

 

7-17-2013 agenda

Anyone calling in needs to do so AHEAD of time. Call-in or WebEx members should get set up 10 minutes before the scheduled meeting time.  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.

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. 

Only one individual with CF may be present in the Blake Wilbur meeting room; this guideline holds for all CF adults regardless of culture status, MRSA, b. cepacia, and so forth. Contact the chairperson Laura Steuer for further information.

Please have your own copy of the agenda and attachments with you during the meeting.

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, July 17, 2013, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room & Webex

Open Session

1.      Introductions & meeting guidelines (5:00 – 5:05)

2.      Adopt June minutes (5:05 – 5:10)

Read minutes at http://cfacmeetings.blogspot.com/2013/07/acfac-6-19-13-meeting-minutes.html

3.      ACFAC / CF Center partnership projects (5:10 – 5:40)

Current project: “Supporting newly-diagnosed CFRD adults”

Presentation of projects for council input:

a.       Resource Card: review document at 

https://docs.google.com/file/d/0B7WrtjnOi5wMUWlibnJoNmRDdWM/edit?usp=sharing (Ed, Laura)

b.      Social Media/FB page:

·   URL, site, design (Brian E.)

·   Text: review document at https://docs.google.com/file/d/0B7WrtjnOi5wMeGxLQUxwMmpiaFU/edit?usp=sharing (Richard)

4.      Quick Updates (5:40 – 5:55)

Peer2Peer program status (Elyse)

Council Projects page on website (Jay)

Temp Secretarial roles (Jackie)

Closed session

5.   ACFAC goals (6:00 – 6:40)

Council members: ideas and brainstorming for our next direction

6.   Readout of Action Items (6:40 – 6:45) (Richard)

7.   Next meeting: Wednesday, August 21, 5:00pm-7:00pm

#########

Topic: CF Meeting-July 2013 

Date: Wednesday, July 17, 2013 

Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 

Meeting Number: 808 730 533 

Meeting Password: Wel2010come 

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number below and enter the access code. 

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ACFAC 6-19-13 Meeting Minutes

Members Present: Angel, Brian E., Brian T, Elyse, Laura, Jay, Colleen, Ann, Jackie

Guests Present: Sarnjit, Eric

Members Absent: Lauren, Richard

1. May 2013 minutes approved.
2. Secretary role for taking of minutes divided up for August – November as Jackie will be out on "maternity leave."  Colleen will do August and November, Jay will do September, and October is to be assigned.  It was questioned whether or not the vice chairperson role accepts that task if the secretary is not present.
3. It has been brought to Laura's attention that some people have been unclear with the direction of the council with regard to the projects over the past few months.  Members have suggested that when the council takes on a new goal or project to have a closed session, or further dialogue after members have had more time to think about the projects.  The council agreed to continue to discussion in the closed session.
4. To recap the CFRD project, last month the council decided to proceed with the bookmark idea and the social media webpage.  The council decided to move away from the "buddy system" idea and the support group due to the large scope of the project and the HIPPA regulations that may make implementation of these difficult.
5. For the bookmark, it was clarified that it is a physical handout, "pocket–sized" that will contain some basic yet useful information.  It was suggested to include some popular apps that others have found useful.  It was also suggested to add in contact information, such as the Endocrine department, diabetes educator and the dietician.  It was also recommended to make the size of the bookmark fit into the carrying case for the glucometer.
6. For the social media Facebook page, Brian was looking for feedback as to what the council wants to have in the CFRD page, and Brian will meet with Meg to get that process started.  Brian reviewed the different types of websites available and which features the council feels are important in the Facebook page.  Some pages are more informational and others are more of a supportive set-up.  The next step will be to take the feedback provided by the council to Meg and the website / Facebook page developer.
7. Colleen and Richard initiated discussion for the paragraph of introduction for the Facebook page, editing and modification ongoing.
8. Closed session was held in which the council discussed the direction and goals of the council for moving forward.
9. Next meeting set for July 17th from 5 – 7pm.

 Action Items

1. Laura: Will get the apps and website addresses from Ed to add to the CFRD bookmark, as well as determine the contact info for who to put on the bookmark.
2. All:  To think about goals for the council for the next meeting
3. Richard / Colleen: To work on the text for the social media page
4. Ed: To get the apps information to Laura of the CFRD bookmark