Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, January 22, 5:30pm-6:50pm 

Location: WebEx

Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Please have this copy of the agenda and attachments with you during the meeting.

 

Agenda

1.    Adopt November minutes (5:30)

Please review Shawn’s minutes on the blog or via his email previously sent to you

2.    Project Update (5:30 – 6:15)

a.    Memorial Space at Stanford – Ed and Colleen
New hospital is for inpatients only, raising a concern about accessibility for CF patients.  Council provided suggestions that will be pursued

b.    Informational Sheet on Masks – Shawn
Shawn to get final input from the clinic, share updates

c.    CF Encounters – Jacob
Jacob taking ownership, Brian to share files and support as needed

d.    MyHealth update – Shawn
Shawn has been contacted by the MyHealth team about restarting, update next month

e.    Virtual Clinic Proposal/Online Collaboration – Brian/Amy
Amy will participate in working with Russell, Brian to support as needed

f.     New Member Drive
Reminder – reach out to CF patients if you are leading a project

g.    Additional Stanford Volunteer Activities – Shawn/Olivia
Walk with Me has started and is considered valuable by all

h.    Transplant Education – Elyse
Draft has been completed, update next meeting

i.      Bodywork & Value for CF Patients – Olivia
Project scope will be defined, reviewed at next meeting

j.      Clinic-Patient Opportunities – Shawn/Elika
As needed

3.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD

ii      Inpatient Preparedness

4.    Final Comments/Discussion (6:15 – ???) 
Next meeting February 26, 2019

 

 

 

ACFAC          https://goo.gl/ne8unP   

 

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, August 28, 2018, 5:30pm-6:50pm 

Location: Blake Wilbur Room W1084 & WebEx

WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines.  Please do not attend in person if you have an active viral infection or any other contagious condition.

 

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

Agenda

1.    Intro (5:30 – 5:40)

2.    Adopt July minutes (5:40)

Please review Shawn’s minutes on the blog or via his email previously sent to you

3.    Project Update (5:40 – 6:10)

a.    Memorial Space at Stanford – Colleen
Should hear soon what the possibility is to have a piece of art within Stanford dedicated to those we have lost to CF.
Potential for aligning with a CF artist - Colleen

b.    Informational Sheet on Masks – Shawn
Review file on Facebook page, Shawn to update info on additional masks.

c.    CF Encounters – Brian
Good feedback from Mary, waiting for next steps from her management

d.    MyHealth update – Brian/Shawn
Update as available

e.    File Management Approach – Ed
Ed to provide thoughts to Brian

f.     Virtual Clinic Proposal/Online Collaboration – Brian
Potentially re-do pilot

g.    New Member Drive
Discuss document

h.    Additional Stanford Volunteer Activities – Shawn
Expected on hiatus until fall.

i.      Coordination with CFF and external clinic development – Shawn
No updates (most likely starts up again in Fall)

j.      Clinic-Patient Opportunities – Shawn/Elika
Discuss with Clinic on Announcements of Policy Changes that Affect Patient Health

4.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD

ii      Transplant Education – TBD

iii    Inpatient Preparedness

iv    CF Patient Medical Compendium

5.    Final Comments/Discussion (6:30 – 6:40) 
Next meeting September 25, 2018

6.    Closed Session (6:40 – 7:00)

 

 

 

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, July 24, 2018, 5:30pm-6:50pm 

Location: Blake Wilbur Room W1084 & WebEx

WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines.  Please do not attend in person if you have an active viral infection or any other contagious condition.

 

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

Agenda

1.    Welcome Amy & Welcome Back Elyse! (5:30 – 5:40)

2.    Adopt June minutes (5:40)

Please review Shawn’s minutes on the blog or via his email previously sent to you

3.    Project Update (5:40 – 6:10)

a.    Memorial Space at Stanford – Colleen
Should hear soon what the possibility is to have a piece of art within Stanford dedicated to those we have lost to CF.
Potential for aligning with a CF artist - Colleen

b.    Informational Sheet on Masks – Shawn
Shawn has the content, will put it together for review in next meeting.

c.    CF Encounters – Brian/???
Would like to find an owner for this one..

d.    MyHealth update – Brian/Shawn
Update.

e.    File Management Approach – Ed
Ed to provide thoughts to Brian

f.     Virtual Clinic Proposal/Online Collaboration – Brian
Need to determine next steps

g.    New Member Drive
Discuss document

h.    Additional Stanford Volunteer Activities – Shawn
Mentoring program with Stanford medical students was very successful, volunteered for next year’s program.

i.      Coordination with CFF and external clinic development – Shawn
No updates (most likely starts up again in Fall)

j.      Clinic-Patient Opportunities – Shawn/Elika
Discuss with Clinic on Announcements of Policy Changes that Affect Patient Health

4.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD
Potential approach would be to collect resources and make available to patients in a handout or pamphlet.

ii      Transplant Education – TBD

iii    Inpatient Preparedness

iv    CF Patient Medical Compendium

5.    Final Comments/Discussion (6:30 – 6:40) 
Next meeting August 28, 2018

6.    Closed Session (6:40 – 7:00)

May Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, May 22, 2018, 5:30pm-6:50pm 

Location: Blake Wilbur Room W1084 & Join WebEx

WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx dialog below or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines.  Please do not attend in person if you have an active viral infection or any other contagious condition.

 

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

Agenda

1.    Introduction (5:30 – 5:40)

2.    Adopt April minutes (5:40)

Please review Shawn’s minutes on the blog or via his email previously sent to you

3.    Brainstorm – New Member Drive (5:40 – 6:00)
Discuss document

4.    Project Update (6:00 – 6:30)

a.    Memorial Space at Stanford – Colleen
Update

b.    Informational Sheet on Masks – Shawn
The rough draft posted to the website, still waiting for confirmation by clinic on content. Shawn to focus on encouraging clinic participation.

c.    CF Encounters – Brian
Brian to contact Mary Song on capture and sharing of content that is captured.

d.    MyHealth update – Brian/Shawn
Update.

e.    File Management Approach – Ed
Ed to provide update

f.     Virtual Clinic Proposal/Online Collaboration – Brian
No update.

g.    Additional Stanford Volunteer Activities – Shawn
Mentoring program with Stanford medical students going well, meeting on a weekly basis.

h.    Coordination with CFF and external clinic development – Shawn
No updates

i.      Clinic-Patient Opportunities – Shawn/Elika
Discuss with Clinic on Announcements of Policy Changes that Affect Patient Health

5.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD
Plans follow-up discussion with social worker, will align with Aimee to get together.  Current approach would be to collect resources and make available to patients in a handout or pamphlet.

ii      Transplant Education – Larissa
In initiation phase, working with Elika and the transplant team, update next month.

iii    Inpatient Preparedness

iv    CF Patient Medical Compendium

6.    Final Comments/Discussion (6:30 – 6:40) 
Next meeting June 26, 2018

7.    Closed Session (6:40 – 7:00)

March Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, March 27, 2018, 5:30pm-6:50pm 

Location: Blake Wilbur Room W1084 & Join WebEx

WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx dialog below or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines.  Please do not attend in person if you have an active viral infection or any other contagious condition.

 

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

Agenda

1.    Introduction (5:30 – 5:40)

2.    Adopt February minutes (5:40)

Please review Shawn’s minutes on the blog or via his email previously sent to you

3.    Project Update (5:40 – 6:30)

a.    CF Education Day report  - Colleen

b.    Memorial Space at Stanford – Larissa/Brian/Ed
Set up next steps

c.    Transplant Education – Larissa
In initiation phase, working with Elika and the transplant team, update next month.

d.    Family Planning – Abby
Plans follow-up discussion with social worker, will align with Aimee to get together.  Current approach would be to collect resources and make available to patients in a handout or pamphlet.

e.    Informational Sheet on Masks – Larissa
Larissa has a rough draft posted to the website, still waiting for confirmation by clinic on content. Aimee volunteers to help with Microsoft Tools to format final draft.  Shawn to assist on encouraging clinic participation.

f.     CF Encounters – Abby
Abby to contact Mary Song on capture and sharing of content that is captured.

g.    MyHealth update – Abby
Abby update on recent interviews.

h.    File Management Approach – Ed
Ed to provide update.

i.      Virtual Clinic Proposal/Online Collaboration – Brian
Volunteers – Shawn still working on getting the Piko-6.  Aimee and Abby to provide initial impressions on value and challenges of home FEV1 measurement to Brian.

j.      Coordination with CFF and external clinic development – Shawn
Mentoring program with Stanford medical students going well, meeting on a weekly basis.

k.    Clinic-Patient Opportunities – Angel/Elika
Discuss with Clinic on Announcements of Policy Changes that Affect Patient Health

4.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

Inpatient Preparedness

CF Patient Medical Compendium

Top requests for clinic – improvement areas or informational needs

5.    Final Comments/Discussion (6:30 – 6:40) 
Next meeting April 24, 2018

6.    Closed Session (6:40 – 7:00)

Administrator invites you to this meeting.   CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm The 4th Tuesday of every month, from Tuesday, March 27, 2018, to Tuesday, February 26, 2019 4:40 pm  |  Pacific Daylight Time (San Francisco, GMT-07:00)  |  2 hrs 20 mins Meeting number (access code): 801 090 638 Meeting password: w1084   Add to Calendar When it's time, join the meeting. Join by phone 650-227-4712 US Toll 650-227-4712 US Toll CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm The 4th Tuesday of every month, from Tuesday, March 27, 2018, to Tuesday, February 26, 2019 4:40 pm  |  Pacific Daylight Time (San Francisco, GMT-07:00)  |  2 hrs 20 mins Meeting number (access code): 801 090 638