ACFAC 1/16/13 Meeting Minutes

ACFAC Meeting Minutes – January 16^th,  2013             

 

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

 

Members Absent: Ann, Ed, Brian T.

 

Guests Present: Eric, Zoe, Kathy

 

1. December 2012 meeting minutes approved.
2. Update provided on clinic goals.  These include emphasis on improving clinic visit attendance to every 2-3 months.  Not only is this the recommendation of the CF Foundation, but research shows regular visits improve overall clinical outcomes.  Ideas also introduced to improve visual display in the waiting room encouraging the theme of "partners in compliance" and working the clinic team.
3. Fundraising update provided by Elyse regarding the current project of raising funds to assist with transportation to clinic.  The letter is ready to be sent and the plan is to have the letter sent out by February 14^th.  Currently there is a list of people that the letter is being sent to.  However, if as a member you would like to send a letter to one of your own contacts, that can be done as well.  The two ways to do that are to contact Ann/Elyse and give them the address and they will send it out, or to let Colleen know and she will send you the letters and you may send them out.
4. Laura met with Meg to discuss the best method to present the information that was obtained from those researching transportation methods.  Meg indicated to Laura that a handout, brochure-sized, and broken down by route plan from each of the city areas (Sacramento, Monterey, Salinas) to Stanford.  Meg also asked that for the other topics, such as vouchers and childcare, that a message to talk to the social worker about options be placed in the brochure.  Laura, Jay and Richard to work on the brochure.
5. The council continued the bylaw review.
6. The council voted in officers for 2013.  Laura will continue as Chairperson, Jackie will continue as Secretary, Colleen will continue as Membership Chair,  and Jay will continue as Website Revision Manager.  Lauren decided to step down as Vice Chairperson, and Richard was nominated and accepted.
7. Lauren provided an update on the Peer2Peer program.  Training has been completed and the mentors have been assigned mentees.  "Remote" mentoring continues to be encouraged to abide by infection control protocols.   Currently mentors are initiating contact with the mentees.
8. Colleen provided an update for the CF Ed day, which will be held on March 2^nd, 2013.  Invitations being sent shortly.  There will be a table designated for the council and a representative will have about 5 minutes to speak, if desired.  For those who are unable to attend, the CF Ed day presentations are streamed live, and also videotaped and available from CFRI.  Slides will also be available on the Stanford CF Website, and attendee books will be available.  The CF Ed day follows the regular infection control guidelines, and the day is geared more towards caregivers and parents.
9. Laura provided an update on the voting for photos with bios on website.  The vote was not unanimous, therefore, photos will not be placed at this time.  A discussion was held regarding pros and cons, and ultimately decided that there may be more effective ways to let people know who the council members are.  One example is the buttons that are available to wear for those who would like one.
10. Next meeting set for Wednesday, February 20^th from 5pm to 7pm.

 Action Items

1.  Laura, Jay and Richard to have a brochure to present by the next meeting.
2. Laura to follow up with Joan about the idea of a shuttle service.

 

1-16-13 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, January 16, 2013, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room

COUNCIL BUSINESS

1.      Introductions (5:00 – 5:15)

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

• Review minutes at http://cfacmeetings.blogspot.com/2013/01/acfac-12-19-12-meeting-minutes.html

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

Current goal: supporting CF center goal “helping patients gets to clinic”

• Clinic update: successful changes (Laura)
• Fundraising update (Ann, Elyse)
• Information delivery: effective format for social worker & CF team (Laura). See documents https://docs.google.com/file/d/0B7WrtjnOi5wMYmNGQWlnSDdZRWs/edit (Richard) and https://docs.google.com/file/d/0B7WrtjnOi5wMeFRRVTZPNU9BOXc/edit (Brian E)

4.      Annual document review, part 11 (6:20 – 6:30)

• All voting members, review our bylaws http://cfcenter.stanford.edu/acfac/documents/advisory_council_bylaws-final4-18-2012.pdf. Be ready for another “quiz” with prizes J

5.      Quick updates and check-ins (6:30 – 6:45)

• Peer2Peer program (Lauren)
• Stanford CF Education Day 3/213 (Colleen)
• Vote results: website bios; ACFAC buttons (Laura)

6.   Action items (6:45 – 6:50) 

5.   Date/time for next meeting: Wednesday, February 20, 5:00pm-7:00pm

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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

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Topic: CF Mtg - Dec
Date: Wednesday, December 19, 2012
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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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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