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
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.
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..
Would like to find an owner for this one..
d. MyHealth update – Brian/Shawn
Update.
Update.
e. File Management Approach – Ed
Ed to provide thoughts to Brian
Ed to provide thoughts to Brian
f. Virtual Clinic
Proposal/Online Collaboration – Brian
Need to determine next steps
Need to determine next steps
g. New Member
Drive
Discuss document
Discuss document
h. Additional
Stanford Volunteer Activities – Shawn
Mentoring program with Stanford medical students was very successful, volunteered for next year’s program.
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)
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
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.
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
Next meeting August 28, 2018
6. Closed Session
(6:40 – 7:00)
