Stanford Adult Cystic Fibrosis Patient & Family Advisory
Council
Date/Time: Tuesday, March 27,
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 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
Set up next steps
c. 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.
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.
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.
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.
Abby to contact Mary Song on capture and sharing of content that is captured.
g. MyHealth update – Abby
Abby update on recent interviews.
Abby update on recent interviews.
h. File Management Approach – Ed
Ed to provide update.
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.
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.
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
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
Next meeting April 24, 2018
6. Closed Session
(6:40 – 7:00)
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