ACFAC Site: Meeting Blog

Thursday, July 11, 2013

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.

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

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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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Wednesday, July 10, 2013

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

May 2013 minutes approved.
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.
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.
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.
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.
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.
Colleen and Richard initiated discussion for the paragraph of introduction for the Facebook page, editing and modification ongoing.
Closed session was held in which the council discussed the direction and goals of the council for moving forward.
Next meeting set for July 17th from 5 – 7pm.

Action Items

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.
All: To think about goals for the council for the next meeting
Richard / Colleen: To work on the text for the social media page
Ed: To get the apps information to Laura of the CFRD bookmark

Monday, June 10, 2013

6-19-13 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.

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, June 19, 2013, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room & Webex

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

2. Officers (5:05 – 5:15)

· Assignment of temporary Secretarial role

3. Adopt May minutes (5:15 – 5:20)

· Review minutes at http://cfacmeetings.blogspot.com/2013/05/acfac-4-17-13-meeting-minutes.html

4. ACFAC / CF Center partnership projects (5:20 – 5:55)

Current project: “Supporting newly-diagnosed CFRD adults”

a. Review of council decisions March - May

b. Presentation of project drafts for council input:

· Bookmark: see document at https://docs.google.com/file/d/0B7WrtjnOi5wMcG1sXzdmU3J4ZG8/edit?usp=sharing. Council to give feedback (Ed, Laura)

· Progress on Social Media/FB page (Brian E.)

· Text, titles for page (Richard, Colleen)

5. Council members session (6:00 – 6:30)

· History and context of clinic/council partnership projects

· Looking ahead: council priorities, our goals

6. Quick Updates (6:30 – 6:40)

· Peer2Peer liaison, status of program (Elyse, Lauren)

7. Action Items (6:40 – 6:45)

8. Next meeting: Wednesday, July 19, 5:00pm-7:00pm

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To attend this meeting via WebEx:

Topic: CF June Meeting

Date: Wednesday, June 19, 2013

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

Meeting Number: 809 129 526

Meeting Password: Wel2010come

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To join the online meeting (Now from mobile devices!)

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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=207286347&UID=1397447222&PW=NO

DM1ZDZmYmVh&RT=MiM0

2. If requested, enter your name and email address.

3. If a password is required, enter the meeting password: Wel2010come

4. Click "Join".

To view in other time zones or languages, please click the link:

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To receive a call back, provide your phone number when you join the meeting, or call the

number below and enter the access code.

Call-in toll-free number (US/Canada): 1-877-668-4493

Call-in toll number (US/Canada): 1-650-479-3208

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Friday, June 7, 2013

ACFAC 5-15-2013 Meeting Minutes

ACFAC Meeting Minutes – May 15th, 2013

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

Guests Present: Kathy, Eric, Sarnjit, Meg

Members Absent: Lauren, Brian T.

April 2013 minutes approved.
Jackie is expecting (due in October) and requested a council member or members to help with temporarily filling in at Secretary role to take minutes, possibly starting August but definitely starting September. Colleen volunteered to take minutes for August meeting.
Discussion regarding the council's new project in partnering with the clinic, supporting newly diagnosed CFRD (Cystic Fibrosis Related Diabetes) patients. Members who had areas to research presented his/her findings on that specific area.

Kathy provided some background and discussed what is currently provided to newly diagnosed CFRD patients. This includes: a booklet designed by the CF Foundation regarding CFRD, approximately 45 pages long; a glucometer and handbook; and the possibly of using mobile applications (apps) to help with management of CFRD.
Ed and Kathy researched the area of apps for mobile use. Kathy had several that have already been "vetted." The next goal is to organize the apps into categories and possibly create a bookmark type handout that can be provided to patients. Ed requests that any member who is using an app, to let him know to add it to the list.
The next area discussed was the possibility of a separate CFRD support group. Elyse investigated this possibility with Meg and the consensus was that a separate group would not be feasible. Instead, Meg's goal is to have at least one adult support group meeting per year devoted to CFRD. Meg also mentioned that the CFRD tends to come up during support group meetings, regardless of the topic. It was also noted that this avenue does not really address the newly diagnosed, and while ongoing support for CFRD is needed, the current goal is outreach to those who have been newly diagnosed.
Laura investigated the possibility of a mentor or buddy system. Given the training required and liability involved, it was also agreed that this may not be the best avenue to start out.
The last area discussed was the use of social media. Brian researched different types of social media and had a presentation that will be emailed to council members after the meeting. He looked at the different types of resources and highlighted the different tasks of the websites. Some sites are more informational in nature, and others are designed for more interaction. The goal of his presentation was to help the council identify what the council wanted from the social media for this project.
Meg identified that many CF patients she works with find social media, specifically Facebook, as an integral resource for discussing topics and even "venting." It is seen as a method of support that is essentially available at all times. Meg has talked with Stanford's Facebook liaison regarding having a private Facebook group for CFRD support. The group would be private, via invitation only, and per the liaison, would be separate from a person's own page. For example, information posted by a person to the private group page would not appear on his or her own timeline. It was discussed that should the council decide to proceed, that the council members should all participate to help get the page going.

Ann provided an update regarding the fundraising efforts for the transportation project. To date, there have been 25 donors with a total of $5,265. All donors have been given Thank You letters.
Colleen provided an update on membership. Lauren has decided to leave the council. Laura to talk with Lauren to get a final date and also to get any needed information for the Peer2Peer program. Elyse also volunteered to be the new point person for the program.
A closed session was held to vote on a new member.
Next meeting set for June 19th from 5 – 7pm.

Action Items

All: Let Ed know if you are using any apps related to CFRD
Laura: To work with Ed to develop a bookmark style handout for the completed list of apps
All: Review Brian E.'s presentation regarding the difference in websites
Richard and Colleen: To brainstorm a catchy title and description for the private CFRD Facebook group/page

Wednesday, May 8, 2013

5-15-2013 Agenda

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. 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 actual meeting room; please contact the chairperson Laura Steuer for further information.

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 attend via Webex.

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, May 15, 2013, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

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

2. Membership (5:05 – 5:15)

(Colleen, Jackie)

3. Adopt April minutes (5:15 – 5:20)

· Review minutes at http://cfacmeetings.blogspot.com/2013/05/acfac-4-17-13-meeting-minutes.html

4. Patient-Family Centered Care: ACFAC / CF Center partnership projects

Current project: “Supporting newly-diagnosed CFRD adults”

a. Research and findings on possible approaches (5:20 – 5:50)

o Clinic handouts; new resources (Ed)

o Support group (Elyse)

o Mentoring/buddy system (Laura)

o Social media (Brian E., Meg)

b. Council discussion: select approach, assign tasks (5:50 – 6:20)

5. Quick updates (6:20 – 6:30)

· Fundraising total (Ann)

· Peer2Peer program (Lauren)

6. Action Items (6:30 – 6:40)

7. Next meeting: Wednesday, June 19, 5:00pm-7:00pm

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To attend this meeting via WebEx:

Topic: CF Meeting May 2013 
Date: Wednesday, May 15, 2013 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 809 978 217 
Meeting Password: Wel2010come 

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To join the online meeting (Now from mobile devices!) 
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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=204479062&UID=1385700807&PW=NO
GZlNzA2MDFi&RT=MiM0 
2. If requested, enter your name and email address. 
3. If a password is required, enter the meeting password: Wel2010come 
4. Click "Join". 

To view in other time zones or languages, please click the link: 
https://stanfordmed.webex.com/stanfordmed/j.php?ED=204479062&UID=1385700807&PW=NOGZlNzA2MD
Fi&ORT=MiM0 

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To join the audio conference only 
------------------------------------------------------- 
To receive a call back, provide your phone number when you join the meeting, or call the 
number below and enter the access code. 
Call-in toll-free number (US/Canada): 1-877-668-4493 
Call-in toll number (US/Canada): 1-650-479-3208 
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?service
Type=MC&ED=204479062&tollFree=1 
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf 

Access code:809 978 217 

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For assistance 
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2. On the left navigation bar, click "Support".

Monday, May 6, 2013

ACFAC 4-17-13 Meeting Minutes

ACFAC Meeting Minutes – April 17th, 2013

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

Guests Present: Kathy, Karrie, Karen, Sanjeet, Renetta

Members Absent: Jackie, Lauren

March 2013 minutes approved.
Introductions: Renetta introduced Sanjeet, the new pulmonary assistant clinical manager. Also introduced was Karen, who is the new heart/lung transplant manager and is covering for Eric.
Kathy discussed the progress on the last project, the infection control Question/Answer handout. After the council reviewed and made suggestions electronically, the final product was sent back to Kathy and she presented it to the Infection Control designee for review. The product was approved and the clinic has begun to distribute it to patients who are being admitted. The goal is to continue to review the guidelines not only with the nursing staff, the other ancillary staff as well. Continued review and feedback is being sought and updates to be provided after several months. Of note, Jay did try to join the webcast held by the CFF after the new recommendations were released, but it was only open to the first 2,000 to sign up.
Discussion regarding the council's new project in partnering with the clinic, supporting newly diagnosed CFRD (Cystic Fibrosis Related Diabetes) patients. The goal is to provide psychosocial support and "tips" (vs. medical advice) to those who are coping with the new diagnosis of CFRD. The age group of the newly diagnosed CFRD patients tends to be between the ages 18-34. Currently, the clinic provides a book and other various written resources, as well as referring the patient to endocrinology and diabetes educator services. Several aspects for expansion of support were discussed including, means of support (telephone/email/online), set-up of program (formal mentoring vs. informal "resource" list), and distribution of materials (written vs verbal). The discussion brought out several key ideas for further research as follows:

The council discussed that while 1:1 support would be helpful, this project does not seem to be as formal as the Peer2Peer program. In fact, it may just be a one-time conversation on topics within CFRD such as insulin pump information or carb counting. Another idea brought up was having a resource list of patients who have agreed to be contacted in the event the clinic has a patient with specific questions. Several council members indicated that training would be required as patients may have more medically-based questions that would not be appropriate for the resource contacts to address.
In terms of online avenues, the council plans to further research the capabilities of using the website as a method information dissemination and/or online messaging, support, chat, etc.
Another idea was a support group. The CF support group in May was devoted to CFRD, and depending on its success, the council would like to bring up the possibility of having a separate support group for CFRD. After discussion, the various areas were split up for members to research. Please see action items for details

Ann provided an update regarding the fundraising efforts for the transportation project. To date, there have been 25 donors with a total of $4,765. Ann still has several people who have plan to donate and feels that the council will reach the $5,000 goal. The council will continue to follow up with Meg to see how long the funds last and will discuss in later meetings whether this will be a yearly goal. Laura is interested to see some statistics in several months to see the impact of the funds raised on clinic attendance.
Brian E. attended a meeting that included other Stanford patient advisory council representatives with the focus of address the functionality of the Stanford hospital website and ways to make the website more user friendly.
Jay and Elyse briefly discussed the Peer2Peer program. Some barriers have been presented, but Meg and Amy (the social worker contact for the program) have been contacted and are aware.
Next meeting set for May 15^th from 5 – 7pm. We will continue to have one CF patient at a time in the room. Laura to coordinate the next person to attend.

Action Items

Laura / Elyse - Extend invitation to Meg to the next meeting to provide some insight on the ideas discussed regarding supporting newly diagnosed CFRD patients.
Laura / Elyse – Coordinate with Kathy to bring to Meg the idea of a CFRD support group
Laura – Coordinate with Kathy and Meg ideas for providing training to the potential "resource" contacts
Laura – Coordinate with Kathy to get a copy or idea of the information that is already provided to patients diagnosed with CFRD
Ed - Coordinate with Kathy to compile a list of applications for Apple/Android that may help in the management of CFRD.
Brian E. – Investigate the possibility of online support / capabilities for website functionality

Wednesday, April 10, 2013

ACFAC 3-20-13 Meeting Minutes

ACFAC Meeting Minutes – March 20th, 2013

Members Present: Laura, Brian E., Brian T., Ed, Colleen, Ann, Richard, Jay, Lauren, Jackie

Members Absent: Elyse

Guests Present: Eric, Kathy

February 2013 minutes approved.
Feedback/comment session regarding the Stanford CF Ed day for those that either attended or viewed the topics via the internet. Comments included: Richard gave a great speech regarding the ACFAC, and most found the speakers were informative and interested in the topic he/she was presenting. Those that viewed the topics via the live internet streaming liked that questions were able to be submitted via text/email. Suggestions for next year included more advertising for the internet streaming, and expanding on the topics being covered in the flyer.
Kathy helped to clarify and discuss the new CFF Infection Control Protocol. The CFF Infection Control committee had been working at the national level for the past two years. Sufficient scientific evidence has led to the change in the protocol. The guidelines now recommend a 6ft rule instead of 3ft rule for instances where CF patients are in the same room (i.e. clinic appts) and outdoor events; and recommend that no more than 1 CF patient in the same room during indoor meeting events (i.e. fundraising events, Ed days). These guidelines stem from the research that shows there is a higher risk of cross infection between CF patients than previously understood. While the exact evidence was not provided with the release, the CFF will be holding a presentation on the evidence, that will be streamed on the internet. With regard to the Stanford CF Center, the center follows the CFF guidelines and plans are in the works to provide for less time spent in the waiting room and the utilization of adjacent waiting spaces at clinic to follow the 6ft rule. Kathy also discussed that the masks CF patients wear are not designed to prevent transmission of bacteria, but to allow those in the waiting areas to know who has CF, who does not, and to be able to space accordingly.
Meg now has the flyer/brochure for the "getting patients to clinic" project. Meg also sent a thank you letter to the council for the project and fundraising efforts. As of today, 19 donors have donated $4,225 and Ann expects to meet the $5,000 goal. Laura is in the process of sending out thank you letters to each of the donors.
Kathy discussed potential new goals for the council to begin working on. The two topics that were agreed on by the council were the goal of supporting CF patients who have been newly diagnosed with diabetes, and working on a flyer in conjunction with Kathy and the nursing staff on B3/C3 for an infection control flyer. After discussion, it was voted on to address both goals, and that the infection control flyer could possibly be completed prior to the next meeting via email.
Kathy will send the draft of the current flyer to Laura, and Laura to coordinate an email revision/recommendation process. The purpose of the flyer is to educate CF patient and their families/caregiver regarding the idea of contact isolation. The format is to be a FAQ – type of handout.
The council brainstormed some early ideas about the goal of supporting CF patients newly diagnosed with diabetes. Suggestions included: a buddy system (similar to Peer2Peer with less formality and short term), having a "pool" of CF patients that have allowed self to be contacted to provide advice, visual tools such as tip or resource sheets, and online chat group / webinar. Kathy indicated that it can take at least a year to develop a routine to manage diabetes, and this includes regular blood sugar checks, following up with recommendations such as ophthalmology exams, eating right, and carb / insulin ratios.
Renetta will be stepping down from the Assistant Clinic Manager role and moving to a more "hands –on" role. There will be an interim person hired, more updates to come.
Laura is writing a piece for the next CF newsletter about the Fundraising/Transportation that has just been completed by the council.
Next meeting set for Wednesday, April 17^th from 5pm to 7pm.

Action Items

Laura to email out the draft of the infection control flyer once received from Kathy for council members to make suggestions.
Laura to send out the information regarding the streaming of the CFF presentation discussing the evidence behind the new CFF Infection Control guidelines