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 The old outdated council brochures have been removed.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

 

 

9-17-2012 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, September 19, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of any guests or others as needed.

COUNCIL BUSINESS

1.   Adopt July’s minutes (5:05-5:10)

-    Review July minutes including Action Items at http://cfacmeetings.blogspot.com/2012/07/7-18-2012-acfac-meeting-minutes.html

2.   ACFAC direction and goals Part III (5:10 – 5:55)

-         Laura to open a discussion: now that the council has attended the volunteer orientation and learned about the hospital’s initiative toward Patient/Family Centered Care (PFCC), can we find in this a new paradigm for our council work?

-         For some time, the council has told the clinic what is important to us; we can also hear from the clinic what is important to them.

-         How can ACFAC support the clinic’s goals/visions around PFCC?

-         We hope to hear from clinic admin and clinic healthcare providers on this topic.

-         In addition, what can ACFAC work on over the upcoming year, as a consistent mutual effort by all members (e.g. sponsor an event, hold an educational seminar)?

3.   Clinic operations (5:55 – 6:05)

4.   Peer2Peer Program (6:05 – 6:25)

-    Lauren to provide update on mentor orientation: please read document at https://docs.google.com/document/d/1iGIhUJX_oSrTB9c8q8PXYOXdzDWCm26zmk4wxR7MkOg/edit

-         request council feedback on mentor training issues

-         announce space for additional mentor

5.   Council membership (6:25 - 6:30)

-     Nominations for new Vice Chair

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

-         Jay: pediatric council; updated ACFAC bios

-         Elyse: ACFAC presence on Facebook

-         Laura: CF College 101 event

-         Ed: removal of outdated council brochures

7.   Action items (6:40-6:45) 

8.   Set date/time for next meeting: Wednesday, October 17, 5:00pm-7:00pm

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Webex:

Topic: CF Mtg - Sept
Date: Wednesday, September 19, 2012
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Meeting Number: 808 431 558
Meeting Password: september

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8-15-2012 Agenda

Please note:

• There will be no council meeting this month.
• The Stanford Patient Advisory Council and Volunteer Orientation that was previously scheduled for this time has been postponed.
• Regular council meeting resumes in September.

7-18-2012 ACFAC Meeting Minutes

ACFAC Meeting Minutes – July 18^th, 2012                     

 

Members Present: Laura, Lauren, Colleen, Ed, Kriss, Elyse, Ann, Jackie

 

Members Absent: Eric M., Jay

 

Guests Present: Zoe, Eric W.

 

1. June minutes approved.
2. Information provided regarding the content of the mandatory hospital orientation for volunteers.  Lauren was able to attend the June orientation, and reported that the orientation was helpful in understanding how the ACFAC fits into the hospital and its goals.  It provided information relevant and practical to the patient advisory councils.
3. The next volunteer orientation will be held in the Blake Wilbur conference room, the room in which the ACFAC meetings are held.  Since the orientation is 4 hours long, it will be split up into 2 sessions, the first being Wed August 15^th from 5-7p and the second being August 29^th from 5-7p.
4. It was brought up that current new patients to the Adult CF clinic receive a new patient folder, and in that folder is an old and outdated brochure about the ACFAC.  Currently, there is no contact information.  The council discussed and agreed upon replacing the brochure with the ACFAC flyer and business card. It was also agreed upon by the council to request that the clinic remove the brochure from any other areas it is being used, as it is outdated.
5. Lauren provided an update regarding the Peer2Peer mentoring program.  The launch date is slated for September 1^st , 2012 and it will commence with the training of the mentors.  By this date, the goal is to have the specifics known such as WebEx capabilities, time commitment, mentor responsibilities and these will be discussed with the prospective mentors in the training sessions.  Also discussed is that while Meg will be the person matching mentors/mentees, that the supervising social worker for the program will not be affiliated with the CF center.
6. Elyse has been in contact with Cathy H. to continue to provide updates regarding the ACFAC via the CF Center at Stanford's Facebook page.  The goal will be to start using Facebook to increase awareness of the council and it's programs, such as the Perr2Peer Program, meetings, accomplishments, etc. 
7. Kriss was able to discuss with CFRI the possibility of either having a table, or using the CFRI table to increase awareness of the ACFAC.  It was voted on by the council to use the CFRI table instead of our own table.  The council will provide flyers and business cards for "take-aways."  ACFAC members attending the council will also have "Ask Me" buttons
8. It was discussed for future events, to hold a small drawing or raffle, or ask participants of these events to provide the council with contact information, such as email or phone number to improve outreach and awareness of the ACFAC in the CF community, especially those that are patients or family members of patients at Stanford.
9. Discussion also held regarding ideas for further goals and projects for the council.  Ideas included: Sponsoring events (forums, talks) or items at clinic (such as the cups for coffee / water, pen/pad of paper to ask questions) to increase the awareness of the ACFAC.  The council discussed the list that had been compiled when the council was formed and determined that many of the "goals" had been accomplished.  Discussion of council goals and projects to continue at the September meeting.
10. Discussion held regarding the opening for the vice-chairperson position.  Current members to think about the position and discussion regarding election to be held at September meeting.  Kriss agreed to continue as a voting member and Vice Chairperson until September 1^st.    After that, Kriss offered and council agreed that she will stay on as an advisor/graphic designer.
11. It was voted on and approved to have an "offline" or internet vote should new member applications be received as the August meeting will be for the orientation.
12. Jay was unable to attend the last pediatric council meeting.
13. Next meeting set for Wednesday, August 15th 2012.  Since it will be the orientation, those who have attended the orientation or are excused from it are excused from the meeting.

 

July Action items:

 

1. Kriss: Send first newsletter blurb as an example to Jackie
2. Jackie: Send blurb to Zoe for newsletter by July 27th
3. Laura: Remember for the next agenda to include council marketing brainstorming "something you can use"
4. Kriss: Notify CFRI of council wishes at CFRI table with flyers and business cards (note tablets?)
5. Kriss: Design a 1/4 page tablet design to send to Laura for CFRI retreat
Laura to get 1/4 page tablets printed, give to Kriss at conference
Kriss to bring tablets to retreat
6. CFRI conference needs: 100 flyers, 50 business cards
Kriss to make sure Laura has everything she needs to get these printed
Laura to ensure these flyers and business cards are printed by the CFRI conference
Kriss to bring whatever is left over to CFRI retreat
7. Elyse: Announce mentor program on Facebook
8. Ed: Ask Kathy Gesley to remove brochures from new patient folder and to put council flyer in folder instead. Also ask Kathy to remove council brochure from everywhere
9. Eric Williams: Reserve our conference room for August 29th
10. Laura: Notify Joan of potential cross-infection between CF patients and other populations for orientation meetings' invited guests
11. ALL: An internet vote was approved for a new member application. Please expect this vote and respond to it.
12. Laura: Review council bylaws and email policy
13. Jackie: Move Kriss' contact info on the council directory to the advisor section

 

 

 

 

7-18-2012 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, July 18, 2012, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of any guests or others as needed.

COUNCIL BUSINESS

1.   Adopt last month's minutes (5:05-5:10)

-    Review June minutes at http://cfacmeetings.blogspot.com/2012/06/acfac-june-20th-2012-meeting-minutes.html

2.      PAC volunteer orientation (5:10-5:20)

-     Lauren to report on her experience from June orientation session

-     Laura to provide information for upcoming August sessions

3.   Clinic operations (5:20-5:30)

4.   Peer2Peer Program (5:30 - 5:40)

-     Lauren to provide update: mentor training plans; data collection; next steps

5.   ACFAC direction and goals Part II (5:40 - 6:25)

Followup from June brainstorming session: refer to June minutes (link above): "Where do we go next? What do we champion now? What are our priorities?"

·         Social networking: Elyse to provide Facebook update

·         CFRI conference/retreat: Kriss to report on ACFAC table; discuss printing budget from Eric W; review business card design, see file at  https://docs.google.com/file/d/0B7WrtjnOi5wMNDEzNTM5Y2ItMmQ4Yi00ZTZlLWExY2UtODI1MTA4MWEwMW Vl/edit?hl=en&authkey=CKGJ59YO; ‘Ask Me’ button, see file at https://docs.google.com/open?id=0B7WrtjnOi5wMYjctalEyY3V6bGc

·         CF center newsletter: Eric M to report on ACFAC blurb

·         ACFAC projects: review Norma’s original list for discussion and articulate goals for the year; see https://docs.google.com/open?id=0B7WrtjnOi5wMcGR0bkdoWmQzY2c

6.   Council membership (6:25 - 6:35)

-     Nominations for new Vice Chair

7.   Quick updates and check-ins (6:35 - 6:45)

-     Pediatric council

8.   Action items (6:45-6:50) 

9.   Set date/time for next meeting: Wednesday, August 15, 5:00pm-7:00pm

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Webex:

Topic: CF Mtg - July 
Date: Wednesday, July 18, 2012 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 803 784 942 
Meeting Password: july 

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6-20-2012 Meeting Minutes

June 20^th, 2012 ACFAC Meeting Minutes

Members Present:  Colleen, Ann, Ed, Elyse, Eric M., Kriss, Erika, Jackie

Guests Present:  Rosie, Zoe

Members Absent:  Lauren, Laura, Jay

1. May meeting minutes approved.
2. The mandatory Stanford Hospital volunteer orientation sessions as follows: June 22^nd, 2012 from 1p-5p and June 28^th , 2012 from 530p to 930p.   The orientations will be held in the nursing administration conference room, H0105, ground floor.  Please let Laura or Kriss know if you will be attending.  There was a question if the meetings will be available via WebEx, Kriss or Laura to follow up regarding that issue, as well as any repercussions if a member cannot attend either session.
3. Update regarding the Peer2Peer program:  Lauren still working with Joan for the initial training and set-up of the program.  More information to come at next month's meeting. 
4. Discussion held regarding the ACFAC direction and goals, with focus this month on outreach to the Stanford Adult CF community.  Ideas included: focusing more on "word of mouth", instead of mailers or written communication; use of social networking, specifically, Facebook; including information in the Stanford CF newsletter; using business cards; holding an event to raise awareness; inquiring about having a table at CF-related events in the area, CFRI, for example; and drawing people in by increasing awareness about current council projects. The council decided to begin with using Facebook, Elyse will work with Cathy H. to routinely use the Stanford CF Center Facebook page to provide information about the council.  Information to be provided includes announcing the meeting date / time, and a description of the council to increase awareness.  Members encouraged to brainstorm for next month about goals and projects for the council.
5. The council also discussed methods of outreach and communication that have been successful in the past.  Some members felt the "town hall" style meeting that was held was not successful, in that few from the CF community attended, but helpful to those who did attend.  Also discussed was revisiting the quarterly feedback meetings with clinic staff, however, it was decided that the council currently does not have feedback to provide.  Also discussed was the time of the meetings and whether or not this limits people from being able to attend.  However, it was also discussed that holding the meeting earlier or later would reduce the ability of clinic staff to attend the meetings.
6. The new member application for this month was not received, voting will be postponed until next month.  Reminder provided that voting on new members is held in a closed session, usually at the beginning of the meeting. 
7. Kriss announced her resignation effective after the July 2012 meeting, Erica announced her resignation effective after the June meeting.  Discussion to be held next month regarding the vice chairperson vacancy.  Also discussed was that the bylaws state the minimum number of members must be 9, at the end of the July meeting, the council will be at this minimum. 
8. No discussion regarding clinic operations.
9. Reminders:   The CFRI conference will be held July 27^{th ,} 2012 thru July 29^th, , 2012.  For more information, please visit http://www.cfri.org/formconfreg2012.shtml.  The CFRI retreat will be held July 29^th, 2012 thru August 5^th , 2012.  For more information, please visit http://www.cfri.org/2012Retreat.shtml
10. Next meeting: Wednesday, July 18^th, 2012 5p – 7p.

June Action Items

1. All:  Please consider "Like-ing" the Stanford CF Center page on Facebook
2. All:  Brainstorm ideas for new projects, new goals and continued outreach
3. All: Please let Laura / Kriss know if you will be attending the hospital volunteer orientation.
4. Elyse to contact Laura regarding the WebEx links for the ACFAC meetings to post on the Stanford CF Center Facebook page
5. Kriss to forward a "blurb" to Elyse about the ACFAC description to include on the Stanford CF Center Facebook page
6. Laura / Kriss to continue to try and get more information on the Stanford hospital volunteer orientation dates / times, and WebEx availability
7. Kriss to investigate getting buttons for the members of the council who will be attending the CFRI conference / retreat
8. Eric M to write short "blurb" for the upcoming Stanford CF Center newsletter.  This can be presented / discussed at next meeting for final approval

5-16-2012 Meeting Minutes

ACFAC Meeting Minutes – May 16^th, 2012                     

 

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

 

Members Absent: Eric M.

 

Guests Present: Kathy, Rosie, Zoe

 

1. April minutes approved.
2. Discussion was held regarding how the Stanford Patient Advisory Council (PAC) can help our council to resolve difficult issues, and that if the ACFAC has an issue that cannot be resolved, the Stanford PAC is available as a resource.  The council decided to add an agenda item entitled "Clinic Operations" to allow comments, concerns, etc. to be addressed in the presence of clinic staff, yet retain anonymity.  Council members that would like a comment, concern, etc. brought to the council anonymously can send it to the chairperson to put under this agenda item  
3. Members of the ACFAC are considered volunteers of the hospital.  As a result, members are asked to attend the hospital orientation for volunteers.  There will be two days this is held with various times.  Laura will pass along the specifics as she receives them. 
4. Members have been contacting Lauren regarding being mentors for the Peer2Peer program.  Any further questions or interest should be directed to Lauren.  The program is slated to begin with the training sessions in June/July and more information to follow.  Current members who are interested in becoming mentors are Lauren, Laura, Jay, Elyse and Kriss.  News of the program was also included in the CF center newsletter.
5. Kriss has updated the ACFAC resource page with the new bylaws and the new flyer.  The correct flyer is now on the ACFAC tab on the Stanford CF center website. 
6. Most of the CF team members have completed the "Get to know your team" questionnaire.  One more email invitation to fill out the questionnaire will be sent to the remaining members.
7. Discussion held regarding the council's direction and goals for the upcoming year.  The plan for next month will be to discuss outreach more in-depth, once members have the opportunity to think of ideas. The plan for July will be to set council goals and direction.
8. The next meeting is set for Wednesday, June 20^th 5pm to 7pm.

 

May Action Items:

 

1. ALL - Please remember upcoming mandatory orientation for hospital volunteers (which includes all ACFAC members) in late June, and in early July
2. Laura - Add PAC discussion or clinic operation discussion agenda item early in upcoming agendas
3. Lauren - Add Elyse and Jay to her mentor list
4. ALL - Brainstorm ideas for setting council goals for our July meeting
5. ALL - Brainstorm ideas for council outreach for our June meeting
6. Jay - Coordinate with pediatric council to attend some meetings
7. ALL - If you have specific issues with clinic operations, email the chairperson