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

#########

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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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

1. March 2013 minutes approved.
2. 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.
3. 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.
4. 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: 
1. 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.
2. 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. 
3. 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
5. 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.
   
6. 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.
7. 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.
8. 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

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

 

 

 

 

 

 

 

 

 

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

1. February 2013 minutes approved.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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. 
7. 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.
8. 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.
9. Laura is writing a piece for the next CF newsletter about the Fundraising/Transportation that has just been completed by the council. 
10. Next meeting set for Wednesday, April 17^th  from 5pm to 7pm.

 

Action Items

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

 

 

 

4-17-2013 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.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

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

Location: Blake Wilbur Conference Room

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

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

·         Review minutes at http://cfacmeetings.blogspot.com/2013/04/acfac-3-20-13-meeting-minutes.html

3.      Patient-Family Centered Care: ACFAC / CF Center partnership projects (5:10 – 6:20)

a.       Follow-up from March project (5:10 – 5:20)

·         Contact Isolation guidelines for C3 and B3 hospital units, see https://docs.google.com/file/d/0B7WrtjnOi5wMSEVsOC1xZUtkSkU/edit?usp=sharing

b.       New project: “Newly-diagnosed CFRD” (5:20 – 6:10)

·         Barriers to CFRD management; knowledge base; checking sugars; food issues

·         Short-term support; buddy system; online/chat support; printed material; pool of similar patients; other

c.       Tasks and assignments  (6:10 – 6:20)

4.      Quick updates and check-ins (6:20 – 6:30)

·         Fundraising totals (Ann, Elyse)

·         Peer2Peer program (Lauren)

·         Stanford website review & CF use cases (Brian E.)

5.      Action items (6:30 – 6:40) 

6.      Date/time for next meeting: Wednesday, May 15, 5:00pm-7:00pm

#########

To attend this meeting via WebEx:

Topic: CF Advisory Meeting-April 

Date: Wednesday, April 17, 2013 

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

Meeting Number: 285 942 151 

Meeting Password: Wel2010come 

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number below and enter the access code. 

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3-20-2013 Agenda

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

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.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, March 20, 2013, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room

1.      Introductions (5:00 – 5:05)

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

·         Review minutes at http://cfacmeetings.blogspot.com/2013/03/acfac-2-20-13-meeting-minutes.html

3.      Stanford CF Education Day (5:10 – 5:20)

·         Feedback, thoughts, sharing

4.      CFF Infection Protocol press release (5:20 – 5:35)

·        Medical and social ramifications

5.      Patient-Family Centered Care: ACFAC / CF Center partnership project (5:35 – 6:20)

·         Presentation by staff: What are the current clinic goals/projects? (5:35 – 5:50)

·         Discussion by council: Which goal/project shall we undertake? Assignment of tasks?  (5:50 – 6:20)

6.      Quick updates and check-ins (6:20 – 6:35)

·         Fundraising update: Some great news!  (Ann, Elyse)

·         Clinic operations

·         CF newsletter (Laura)

7.      Action items (6:35 – 6:40) 

8.      Date/time for next meeting: Wednesday, April 17, 5:00pm-7:00pm

#########

To attend this meeting via WebEx:

Topic: CF Advisory Council - March 

Date: Wednesday, March 20, 2013 

Time: 4:45 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 

Meeting Number: 800 309 719 

Meeting Password: march 

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ACFAC 2-20-13 Meeting Minutes

ACFAC Meeting Minutes – February 20^th, 2013             

 

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

 

Members Absent: Elyse, Lauren

 

Guests Present: Eric, Zoe, Kathy

 

1. January 2013 minutes approved.
2. Kathy discussed the upcoming Quality Improvement Initiatives that members of the CF team are working on.  The two upcoming areas are to improve the understanding in clinic and while inpatient of contact isolation and what it means; and to look further into the sleep/wake cycle and how it is affected by an inpatient stay.  Discussion was held regarding the first topic and Kathy is seeking continued feedback about whether staff members are adhering to the infection control protocols while in clinic and while inpatient.  The discussion held indicated that not all CF patients, family members, and caregivers understand the infection control protocol and continued education would help make this area more clear.  For the second topic, the goal is to investigate how modifications to the daily routine of an inpatient stay affect the sleep/wake cycle, as well as the importance of fitting all daily treatments in while inpatient.  Kathy is seeking continued feedback on these areas, so feel free to email her with any other comments that you may have on the topics.
3. Update on Stanford CF Education Day provided by Colleen.  Currently there are 44 people signed up. The CFRI will be live streaming the presentations, and slides of the presentations will be available on the Stanford CF Center website.  Discussion was held regarding whether or not there was a way for people viewing live via the internet to participate and ask questions.  While a "web-ex" type situation is not currently available, it was decided that Colleen would contact CFRI to see if an email/text option can be set-up.  Colleen plans to discuss further possibilities for next year's Ed Day with the CFRI group, to see what, if any, options are available to increase the ability of those viewing via the internet to interact with the group. 
4. Ann provided an update regarding the fundraising project for helping patients get to clinic.  To date, $2500 has been raised, with 4 checks having been received.  It was requested if "Thank You" letters could be printed to send with the tax deductible donation acknowledgement.
5. Laura, Jay, Richard, and Brian E. finalized the transportation information and presented a brochure detailing the different routes that those coming from outlying areas can take to get to clinic.  The information was compiled into an easy-to-follow format and will be passed on to Meg to begin distribution to those in those areas.   Once completed, Laura asked permission from the council to send an email to the team, indication that the project had been complete.  No objections.
6. Laura recognized the hard and "behind-the scenes" work of two members, Ann and Jay for their contributions to the ACFAC/CF center partnership project: "Helping patients get to clinic".  Ann led the fundraising piece while Jay spent hours personally checking the transportation routes with technical detail.  Great job!
7. Laura followed up with Joan Forte regarding the idea of an Enterprise-run van-pool to assist with transport from the airport to Stanford. Stanford's shuttle only transports to the airport. It has been researched in the past by Stanford's Transportation Administrator for a way to facilitate transport to the hospital by working with airport shuttles.  However, this was not able to be arranged.  Enterprise does offer a van-pool, organized by the individual clinics' social workers and paid for by Stanford.  This is another option, but would take a significant amount of coordination by the social workers.   Laura to discuss this with Meg to see if it is a realistic goal worth pursuing.  
8. Update on clinic operations.  Please be reminded that if you have any concerns about clinic, that you may also contact Renita directly.   Rosie has moved back to her original department, and she is being replaced by Karrie O'Neill. Her email is  KO'Neill@stanfordmed.org
9. Next meeting set for Wednesday, March 20^th from 5pm to 7pm.

 

Action Items

 

1. Laura to bring Ed Day materials to Colleen (business cards, buttons and flyers)
2. Laura to meet with Kathy and Dr. Mohabir to get ideas for the next ACFAC/CF Center partnership project
3. Laura/Brian E. to discuss with Meg if the van-pool is a realistic and feasible goal

2-20-2013 Agenda

Please have 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.  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. 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 attend via Webex.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, February 20, 2013, 5:00pm-7:00pm 

Location: Blake Wilbur Conference Room

COUNCIL BUSINESS: Please read all attached documents; they represent a lot of work from a lot of council members.

1.       Introductions (5:00 – 5:10)

2.       Adopt January minutes (5:10 – 5:15)

·         Review minutes http://cfacmeetings.blogspot.com/2013/02/acfac-11613-meeting-minutes.html

3.       Quality Improvement info (5:15 – 5:25)

·         Inpatient/outpatient infection protocols (Kathy)

4.       Stanford CF Education Day (5:25 – 5:40)

·         Presentations, content, goals (Colleen)

·         ACFAC presence

5.       Patient-Family Centered Care: ACFAC / CF Center partnership project (5:40 – 6:20)

Supporting CF Center goal “helping patients gets to clinic”

·         Fundraising’s fantastic results to date (Ann, Elyse): refer to materials at https://docs.google.com/file/d/0B7WrtjnOi5wMUWJWNVFvRE5xLWc/edit?usp=sharing

https://docs.google.com/file/d/0B7WrtjnOi5wMc0VNUVVERG9kV2s/edit?usp=sharing

·         Who was Peter Judge? (Ann)

·         Transportation’s final flyers  (Jay, Richard, Brian E, Laura): see materials at

https://docs.google.com/file/d/0B7WrtjnOi5wMQmI3NTVwZGppcTA/edit?usp=sharing

https://docs.google.com/file/d/0B7WrtjnOi5wMamZoQ0NadVdfWUU/edit?usp=sharing

https://docs.google.com/file/d/0B7WrtjnOi5wMVU9fejlYek5pUEU/edit?usp=sharing

·         Recognizing stealth ACFAC members (curious? good! you’ll find out Wednesday – Laura)

·         Looking ahead to March: new council/center partnership project

6.       Quick updates and check-ins (6:20 – 6:30)

·         Peer2Peer program (Lauren)

·         Clinic operations

7.       Action items (6:30 – 6:40) 

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

#########

To attend this meeting via WebEx:

Topic: CF Patient Advisory Board 
Date: Wednesday, February 20, 2013 
Time: 4:45 pm, Pacific Standard Time (San Francisco, GMT-08:00) 
Meeting Number: 808 786 852 
Meeting Password: February 

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Audio conference information 
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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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Access code:808 786 852 

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2. On the left navigation bar, click "Support". 
To add this meeting to your calendar program (for example Microsoft Outlook), click this link: 
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CCM:+16504793208x808786852#