Monday, March 26, 2018

March Agenda


Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, March 27, 2018, 5:30pm-6:50pm 

Location: Blake Wilbur Room W1084 & Join 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 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

c.    Transplant Education – Larissa
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.

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.

f.     CF Encounters – Abby
Abby to contact Mary Song on capture and sharing of content that is captured.

g.    MyHealth update – Abby
Abby update on recent interviews.

h.    File Management Approach – Ed
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.

j.      Coordination with CFF and external clinic development – Shawn
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


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

6.    Closed Session (6:40 – 7:00)


Administrator invites you to this meeting.
 
CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm
The 4th Tuesday of every month, from Tuesday, March 27, 2018, to Tuesday, February 26, 2019
4:40 pm  |  Pacific Daylight Time (San Francisco, GMT-07:00)  |  2 hrs 20 mins
Meeting number (access code): 801 090 638
Meeting password: w1084
 
 
When it's time, join the meeting.
 
Join by phone
650-227-4712 US Toll
650-227-4712 US Toll
CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm
The 4th Tuesday of every month, from Tuesday, March 27, 2018, to Tuesday, February 26, 2019
4:40 pm  |  Pacific Daylight Time (San Francisco, GMT-07:00)  |  2 hrs 20 mins
Meeting number (access code): 801 090 638