Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, May 22, 2018, 5:30pm-6:50pm
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
Discuss document
4. Project Update
(6:00 – 6:30)
a. Memorial Space
at Stanford – Colleen
Update
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.
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.
Brian to contact Mary Song on capture and sharing of content that is captured.
d. MyHealth update – Brian/Shawn
Update.
Update.
e. File Management Approach – Ed
Ed to provide update
Ed to provide update
f. Virtual Clinic
Proposal/Online Collaboration – Brian
No update.
No update.
g. Additional
Stanford Volunteer Activities – Shawn
Mentoring program with Stanford medical students going well, meeting on a weekly basis.
Mentoring program with Stanford medical students going well, meeting on a weekly basis.
h. Coordination
with CFF and external clinic development – Shawn
No updates
No updates
i. 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
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.
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.
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
Next meeting June 26, 2018
7. Closed Session
(6:40 – 7:00)
