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)