Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, June 25, 2019 from 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 May minutes (5:30)

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

2.    Project Update (6:00 – 6:30)

a.    Memorial Space at Stanford – Ed and Colleen
Artwork selected, next step plaque wording

b.    CF Encounters – Jacob
Has some ideas and will begin to develop them once school has ended

c.    Virtual Clinic Proposal/Online Collaboration – Amy
No update from Russell – will continue to pursue, residents arrive in July.

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

e.    Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me end of year event coming soon, highly recommended

f.     Clinic-Patient Opportunities – Shawn/Kate
As needed

g.    MyHealth update – Shawn
No further information

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

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 (6:30 – ???) 
Next meeting July 23, 2019

 

 

 

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, May 28, 2019 from 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 April 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
A subcommittee meeting on April 29 will review some options of art that they would like to propose to you to consider.  After that meeting, they will prepare information on the works and artists for you to select from – target to be ready for CF Advisory Council meeting on May 28.  Current hospital grand opening is Oct. 19, 2019

b.    CF Encounters – Jacob
Has some ideas and will begin to develop them once school has ended

c.    Virtual Clinic Proposal/Online Collaboration – Amy
Russell Wise waiting for follow-up from last CQI meeting that they had on April 9th.

d.    Transplant Education – Elyse
Will publish in a week after council review, first to Stanford CF Page and possibly hardcopy at the clinic

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

f.     Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me over for Shawn, plans to continue for next year

g.    Clinic-Patient Opportunities – Shawn/Kate
As needed

h.    MyHealth update – Shawn
No further information

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

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 June 25, 2019

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

 

 

 

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)