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
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
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
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
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
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
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
Walk with Me has started and is considered valuable by all
h. Transplant
Education – Elyse
Draft has been completed, update next meeting
Draft has been completed, update next meeting
i. Bodywork & Value for CF Patients – Olivia
Project scope will be defined, reviewed at next meeting
Project scope will be defined, reviewed at next meeting
j. Clinic-Patient Opportunities – Shawn/Elika
As needed
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
Next meeting February 26, 2019
