ACFAC 12-19-12 Meeting Minutes

ACFAC December 19^th Meeting Minutes

Members present: Laura, Lauren, Elyse, Ed, Jay, Ann, Brian T., Richard, Colleen

Members absent: Jackie, Brian E.

Guests present: Rosie, Eric

1. November minutes approved.
2. Introduction of our newest member, Brian T.
3. Fundraising campaign: "Have a heart, help us out" update by Ann and Elyse. They presented their timeline: Letter to be mailed by Feb 7th, 2013. Discussed were issues concerning what mailing list will be used, if a suggested amount should be included on the letter and how the council feels about "asking for money." Ultimately it was concluded that mailing out the letter will be optional for each member. It was restated why fundraising for this particular issue is important to the council and its goals: that the clinic expressed that it would be helpful to have an additional 5,000 dollars to aid the travel expenses (gas cards, hotel vouchers, taxis) of target patients. Another issue brought up was whether this fundraising endeavor will be annual. As of now, it was decided that the fundraising effort is a trial run, with the possibility of it being an annual event.  If it is successful (in raising the money AND improving attendance), the council will decide next year to do it again.
4. The council approved the "Have a heart, help us out" letter, budget, and timeline.  The color option was chosen and $469.00 was budgeted towards it.
5. Laura presented the ongoing research by Richard, Brian E., and herself into transportation to clinic.  She is going to talk to Meg about what format would be best to present the information collected. Then she will bring it back to the council for approval.
6. We had a quiz on the official council webpage. We... did alright.
7. Discussion was held regarding adding photos the council member bios on our webpage. The council will have an electronic vote and talk about it next meeting.
8. Elyse, Lauren and Jay discussed the Peer2Peer program. All have been matched with mentees. Also, there is an extended training session on the 14^th.

Action items:

1. All: Decide if you would like to participate in the fundraiser and contact colleen to "order" letters.
2. Laura: Talk to Meg about the best format to present the transportation information.
3. All: Decide on photos
4. Lauren/Laura: Newsletter blurb on the Peer2Peer Program

12-19-12 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 19, 2012, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room

COUNCIL BUSINESS

1.      Introductions (5:00 – 5:15)

2.      Adopt November minutes (5:15 – 5:20)

• Review minutes at http://cfacmeetings.blogspot.com/2012/12/11-21-12-acfac-meeting-minutes.html

3.      Patient/Family Centered Care: ACFAC / CF Center partnership project (5:20 – 6:20)

• Current project: supporting CF center goal “helping patients gets to clinic”
• Fundraising plan/timeline, presented for council review: Ann, Elyse. Review documents at https://docs.google.com/open?id=0B7WrtjnOi5wMbWJqZnptdU1WcXc and https://docs.google.com/open?id=0B7WrtjnOi5wMOHJPSkk4aHF1cEU
•  Transportation research: Brian E., Richard, Laura
• Next steps: information delivery to CF team, format and timeline

4.      Annual document review, part 1 (6:20 – 6:30)

• All voting members, review our website at http://cfcenter.stanford.edu/acfac/. Be ready for a “quiz” with prizes J

5.      Quick updates and check-ins (6:30 – 6:40)

• Website update, Bios and Council Projects: Jay
• Peer2Peer program: Lauren

6.   Action items (6:40 – 6:45) 

7.   Date/time for next meeting: Wednesday, January 16, 5:00pm-7:00pm

#########

To attend this meeting via WebEx:

Topic: CF Mtg - Dec
Date: Wednesday, December 19, 2012
Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 800 154 807
Meeting Password: december

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11-21-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – November 21st, 2012         

 

Members Present: Lauren, Elyse, Ed, Jay, Ann, Bryan, Jackie

 

Members Absent: Laura, Colleen, Richard

 

Guests Present:  Rosie

 

1. October minutes approved.
2. The council discussed research completed thus far for the members individual areas.  Those members that were researching transportation (Laura, Bryan) included Lions/Kiwanis clubs, Angel Flight, Ride-Share programs, public transportation and the National Patient Transportation Center.  Some of the members split the category up into those needing "medical" assistance for transportation, and those who need a means of transportation.
3. Ann and Elyse, who were researching fundraising opportunities, presented a letter writing campaign.  Discussed were the letter itself and the logistics necessary to create a fund, who to send donations to, methods to send donations, etc.  This information is to be clarified with Eric and Colleen.  The goal is to raise $5,000 and the fund is to support transportation for clinic appointments including necessary additions such as lodging that may be required for long-distance travel. 
4. Jackie researched work-related difficulties.  Most of the resources available are for those who need to take extended absences, over a week or more, but there is a section of the FMLA law that allows for intermittent absences for the management of chronic medical conditions.  Given the guidelines, it appears as though CF would qualify.  While FMLA does not provide financial compensation, it does provide job protection.  There is also a resource book found on the cff.org website geared towards clinicians to help patients with legal rights issues.
5. The training session for Peer2Peer Program was launched.  There were 3 mentors from the CF group and 5 mentors from the Heart Transplant group.  Some people did attend via WebEx.
6. Next Meeting set for Wednesday, December 19^th from 5pm to 7pm.

 

Action Items

 

1. All: If you have not already, please email you're the information you have found in your research regarding your specific area to Laura, as she will compile the information into one document. 

11-21-2012 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, November 21, 5:00pm-6:00pm  (note adjusted time)

Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of any guests or others as needed.

COUNCIL BUSINESS

1.   Adopt October minutes (5:05 - 5:10)

·        Review minutes at http://cfacmeetings.blogspot.com/2012/11/10-17-12-acfac-meeting-minutes.html

2.   ACFAC project: “Supporting patients to get to clinic”  (5:10 - 5:45)

a.   Partnership with CF clinic on their goals, fundamental to enhancing Patient/Family Centered Care

2. Council members present research and findings to date:

·        Laura: transportation for Sacramento/Redding areas

·        Richard: transportation for Monterey area

·        Brian: transportation for Salinas area

·        Jackie: work-related/resource information

·        Ann/Elyse: fundraising plan, tasks, and timeline

3. Next steps: collecting information; setting deadlines

3.   Quick updates and check-ins (5:45 - 5:50)

·        Peer2Peer: mentor training launch

4.   Action items (5:50-5:55) 

5.   Date/time for next meeting: Wednesday, December 19, 5:00pm-7:00pm

#########

Topic: CF Mtg - Nov
Date: Wednesday, November 21, 2012
Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 801 641 260
Meeting Password: november

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Call-in toll number (US/Canada): 1-650-479-3208
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10-17-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – October 17^th, 2012              

 

Members Present: Laura, Lauren, Colleen, Richard, Elyse, Ann, Bryan, Jackie

 

Guests Present:  Eric, Kathy

 

1. September minutes approved.
2. The council held continued discussion regarding council goals and current project, how to support the clinic in meeting the CFF recommendation for at least 4 clinic visits per year.  Laura spoke with Kathy and Dr. Mohabir to narrow the scope of the project.  The following information was derived from her meeting:  The clinic has about 200 adults and approximately 20-25 do not show regularly for appointments.  The geographic areas of most concern are the Sacramento/Redding area and the Monterey/Salinas area.  As described by the clinic, the largest barriers seem to be lack of child care, lack of transportation (financial and mode), work related, and psychosocial. Currently, the CF social worker is able to offer and provide resources, but this is mostly limited to Santa Clara County.
3. After discussion, the council divided up the barriers and geographical areas to further research for more potential resources.  The goal is to provide a working list of resources for the outlying areas that can be readily accessed by the CF social worker to provide information to those who are identified as having barriers.  Fundraising was also identified as a potential resource, and this topic was also added to the list of research items.  Please see Action Items for the breakdown and the members researching each area.  At the November meeting, members will discuss what has been researched thus far.
4. In trying to improve the clinic experience, the clinic has the capacity to see 15 patients per day, and on days when there are over 10 patients, a second RT has been added.
5. The Peer2Peer program is finalizing the method of training for mentors and still looking for more mentors.  Please contact Lauren if interested. 
6. Next meeting set for November 21^st from 5:00pm to 7:00 pm.  While several members will be unavailable as November 22^nd is Thanksgiving, it was determined that there should be enough members for a quorum.  If you are unable to attend the November meeting, please let Laura/Lauren know so they can ensure your research topic information is shared at the next meeting. 

 

Action Items

1. Laura/Elyse: To discuss Facebook
2. Laura: To determine if November meeting could be held on the 14^th instead of the 21^st.  OF NOTE: The room is not available, so the meeting will NOT be changed, it will remain on Nov. 21^st as scheduled.
3. Council Research Topics:

• Ann/Elyse: Fundraising
• Laura: Means of Transportation for Sacramento/Redding areas
• Richard: Means of Transportation for Monterey area
• Bryan: Means of Transportation for Salinas area
• Jackie: Work-Related/Resource Information

 

10-17-2012 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, October 17, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of any guests or others as needed.

COUNCIL BUSINESS

1.   Adopt September minutes (5:05-5:10)

-    Review minutes at http://cfacmeetings.blogspot.com/2012/10/9-17-12-acfac-meeting-minutes.html

2.   ACFAC direction and goals Part IV (5:10 – 6:20)

a.   Followup from September: Our current partner project with the clinic toward their goals, fundamental to enhancing Patient/Family Centered Care:

-        Current goal: “Supporting patients to get to clinic”

-    Scope of project, challenges, and possible solutions. Presentation notes at https://docs.google.com/document/d/1kJAZNspyMqpQdhNnWmPP613p6vH2H0RWWGap4F1rW2U/edit

2. Action plan: Council members to do the following:

-         Discuss and choose tasks to complete project

-         Assign members to various tasks

-         Create general timeline/deadlines and feedback mechanism

3.   Clinic operations (6:20 – 6:22)

4.   Peer2Peer Program (6:25 – 6:30)

5.   Quick updates and check-ins (6:30 - 6:40)

7.   Action items (6:40-6:50) 

8.   Set date/time for next meeting: Wednesday, November 21, 5:00pm-7:00pm

Webex:

Topic: CF Mtg - Oct
Date: Wednesday, October 17, 2012
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00)
Meeting Number: 800 334 669
Meeting Password: october

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2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: october
4. Click "Join".

To view in other time zones or languages, please click the link:
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To join the audio conference only
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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): +1-408-600-3600
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=183296322 &tollFree=1
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:800 334 669

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

9-17-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – September 17^th, 2012         

 

Members Present: Laura, Lauren, Colleen, Ed, Richard, Elyse, Ann, Jackie, Jay

 

Guests Present:  Eric, Kathy, Renetta, Dr. Mohabir

 

1. July minutes approved.
2. Discussion held regarding goals / direction of the council and how to align these with the goals of the clinic. Kathy discussed the clinic goals that have already been achieved including the expanded clinic slots we have now, increased spirometry and social services support, ability to have appointment with same physician, and the endocrinology co-clinic monthly. 
3. Kathy also discussed clinic goals going forward, and identified several areas for the council to assist.  These are: 1. Improving clinic attendance to the CFF standards (4 visits/year), 2. Improving support for newly diagnosed adult patients, including funding to be able to provide written resources, 3. Addressing need for support/education for the growing number of CF patients diagnosed with diabetes, 4. Getting CF to "fit into life", and 5. Difficulties with insurance, especially for those who are newly diagnosed. The council discussed each item in depth and decided to address the first item, improving clinic attendance.  Laura to meet with Kathy to develop an action plan and get specifics regarding the issue.
4. The Peer2Peer Program continues to move forward.  Mentor training id being finalized and will begin in November.  Logistics for those with cross-infection precautions are being addressed.  The program is still looking for 2 more mentors, please notify Lauren in interested.
5. Lauren was nominated and voted on as the new Vice Chairperson.
6. Jay is working on the updates for the member changes on the ACFAC membership page.
7. Reminders to continue to check the CF Center's Facebook Page for council updates, a link to the page to be emailed to council members for easier access.
8. Laura did a CFRI Discovery Series presentation regarding parenting a CF and short discussion held that most of the literature addressed pregnancy and therefore women, but not parenting in general.  For more information, feel free to contact Laura.
9. Colleen has 2 possible candidates interested in council membership.  She will send the applications via email when available and the council will plan to vote via email.
10. The old outdated council brochures have been removed.
11. Next meeting set for Wednesday, October 17^th, 5pm-7pm.

Action Item:

 

1. Laura to meet with Kathy regarding action plan for improving clinic attendance