Monday, February 29, 2016

"02-23-2016" Meeting Minutes

ACFAC 02-23-2016

Members Present: Brian, Jay, Devin, Linda, Colleen, Angel, Shawn, Ed, Monica

Guests: Ronnie, Jennifer

January Minutes Adopted

A. Patient Survey: Brian is working on a patient survey to capture additional information of how patients feel the patient experience can be improved. Jay volunteered to help design the survey.

B.Virtual Clinic Proposal / Online Collaboration: Follow up next meeting

C. CF Encounters: Devin emailed Jennifer and Julian the CF Encounters Project. Ronnie mentioned the CF Encounters Project was passed around during the CF Clinics monthly meeting. The CF Team is working on incorporating the project into the CF Ed Day for the clinic on March 8th. Devin also reached out to Zoe regarding the CF Encounters insert into the Newsletter. Devin will work on a paragraph to go into the next Newsletter.

 D. Informational Sheet On Masks: Devin is working on editing. After editing is complete he will reach out to the clinic for validation.

E. Issue Management Decision Tree Brochure: Outpatient Brochure is printed out and ready to be delivered to clinic. Angel will drop off brochures to the clinic Wednesday February 24th. Meg and Joan received the document via email. Angel will post on the Patient Only Facebook Page.

F. Coordinating with CFF and External Clinic Development: Shawn shared the group is waiting to hear back from 2 out of the 4 invitations. Once approved Shawn will be working with patients helping them communicate with doctors, nurses patients. Right now they are trying to get people excited about it.

G. RPQ Form / MyHealth: Jay emailed the RPQ Form to Christian to be apart of MyHealth. Christian will contact us once they get further along .

H. Clinic Patient Opportunities: Angel will follow up with Elika regarding which medicines aren't available during a hospitalization and what the process should be for patients when using their own medications from home.

I. Pins / Name Badge Council Members: Jay shared the council has to use the Stanford Hospital Volunteer Badges for ID. Jennifer suggested adding a ribbon tag behind the name badge. Jennifer will send Jay a picture of the ribbon that is currently being used by staff members. Jay will collaborate with Mary about adding our logo to the ribbon for our name badges.

Action Items:

Devin: Feedback from the clinic  CF ED Day March 8th CF Encounters Project.

Angel: Post Decision Tree Brochure to Patient Only Facebook Page

Angel: Follow up with Elika regarding which medicines aren't available during a hospitalization and what the process should be for patients when using their own medications from home.

Jay: Update on Council Name Badge Ribbon

Meeting called to a close at 5:50pm.

Next Meeting March 22, 2016 

Tuesday, February 16, 2016

February Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, February 23, 2016, 5:00pm-6:20pm 
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.


1.    Introduction (5:00 – 5:10)
2.    Adopt November minutes (5:10)
Please review Angel’s minutes on the blog or via her email previously sent to you
3.    Project Update (5:10 – 5:50)
a.    Patient Survey – Brian
b.    Virtual Clinic Proposal/Online Collaboration – Erick/Brian
Action Items :
Colleen to provide Erick with the name of our contract in IT; Erick to contact IT for a status updates
c.    CF Encounters – Lauren/Devin
Action Items :
Follow up with Zoe regarding adding an insert about the CF Encounters project in the next CF Newsletter; collect feedback from Jennifer & Julian and Joan with clinic input.
d.    Informational Sheet on Masks Devin
Action Items :
Devin to check with the clinic on their recommendations for which mask(s) should be used
e.    Issue Management Decision Tree – Angel/Monica/Jay/Elika
Action Items :
Follow up with Colleen regarding the budget to get the Outpatient Decision Tree brochures forms printed; Email Outpatient Decision Tree brochure PDF file to Meg and Joan; Post Outpatient Decision Tree Brochure on Patient Only Facebook Page.
f.     Coordination with CFF and external clinic development – Shawn
g.    RPQ/MyHealth update – Jay
Action Items :
Jay: Follow up with Christian regarding how the clinic staff would receive the RPQ form; Coordinate with Julian regarding next meeting with the MyHealth Team; Follow up with MyHealth regarding an calendar alarm for patients refill medication request
h.    Clinic-Patient Opportunities – Angel/Monica/Elika
Action Items :
Angel to check with the clinic to determine which meds aren’t available during a hospitalization and what the process should be for patients when using their own medication from home.
4.    Action Items (5:50 – 6:00)
a.    Joan – update on file storage recommendation
b.    Jay – Evaluate and report on new options for pins or badges for members to wear during Stanford visits for council promotion; contact Mary Song regarding resources for council member name badges.
5.    Reminders
a.    Publicize council and council activities
b.    Continue to complete volunteer requirements
c.    Future Projects
CF Patient Medical Compendium
Hospital RPQ
Passport (card used for CF advocacy for other ER visits) URLs? [Angel/Linda]
6.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting March 22, 2016
7.    Closed Session (6:10 – 6:30)

Administrator invites you to this meeting.

CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm
Occurs the fourth Tuesday of every month effective Jan 26, 2016 until Feb 1, 2017.
4:45 PM | 2 hr 15 min
(UTC-08:00) Pacific Time (US & Canada)

This invitation is for the CF Adult Advisory Council Meeting taking place the fourth Tuesday of each month starting at 5 pm Pacific

Meeting Begins at 5:00 pm
WebEx and TelePresence Connections Open at 4:45 pm

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