Tuesday, April 26, 2016

"04-26-2016 Meeting Minutes"

ACFAC 04-26-2016

Members Present: Brian, Jay, Linda, Angel, Ed, Shawn

Guest: Joan Scott,  Julian Liang

February Minutes Adopted

A. CF Education Day Feedback: Follow up next meeting.

B. Patient Survey: Brian posted a rough draft of the Patient Survey on the ACFAC Only Facebook Page. He is still gathering feedback. Once rough draft is finalized Brian will post the Patient Survey to the Patient Only Facebook Page. Goal is to see how may responses we receive and what information we can gather from the survey. Patient confidentially is most important when we receive responses from patients.

C. Virtual Clinic Proposal / Online Collaboration: Brian received IT contact information from Joan. Brian will contact IT to find out more about the current pilot run of the online virtual clinic at Stanford and how we can participate.

D. CF Encounters: Follow up next meeting.

E. Informational Sheet: Follow up next meeting.

F. Issue Management Decision Tree Brochure: Outpatient Brochure is available at CF Clinic. Angel will post the Outpatient Brochure to the Patient Only Facebook Page to see if patients have grabbed their copy from clinic. Find out if the patients are finding the brochure as a useful piece of resources. Proof#01 of the Inpatient Brochure will be sent out before the next meeting. Goal is for the Inpatient Brochure to be apart of a Inpatient Packet.

G. Passport (Card used for CF Advocacy for other Clinic/ Er Visits): Angel picked up a Pediatric Passport at CF Ed Day. Angel will call the clinic phone to see what the message states regarding the phone number to contact for the Pulmonary Fellow On Call. This information will go on the back of the Passport. Linda will look into the idea of making the Passport Mobile Friendly. The Pediatrics Clinic has an English and Spanish Version. Angel will contact Meg to see if the Adult Clinic needs a Spanish version. Joan mentioned once we know the different langues she can help us translate the verbiage for the passports.

H.Coordination with CFF and External Clinic Development: Shawn will be sending the council an email on how CFF is putting everything in the works.

I. RPQ / MyHealth: Jay has not heard back from Christian regarding uploading the RPQ Form to MyHealth. He will follow up with Christian.

Jay showed everyone via Webex the new ribbon he has been working on. It looks awesome. He will work with Joan to figure out how to mail them out to the council members.

J. Clinic Patient Opportunities: Facebook Topic determine which medicines aren't available during a hospitalization and what the process should be for patients when using their own medications from home. Elika's response "The general rule is that if it's super expensive and difficult to get medication, bring it. Having said that some pancreatic enzymes which are not available don't fall into this category. For simplicity we can use this list of unavailable meds, with the caveat that it can change with time: Xopenex; Kalydeco, Orkambi, Pancreaze, Ultresa, Pertzye and Symbicort. Anything else that is not commonly used will need a case-by-case discussion."
Angel will post response to the Patient Only Facebook Page. In the future this will be part of the inpatient packet along with the inpatient brochure.

File Storage Recommendation: Joan is still working on it.

Joan will follow up with Mary on the status of the councils volunteer requirements. Remember all council members to login in your volunteer hours.

Action Items:

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

Angel: Post Decision Tree Brochure to Patient Only Facebook Page to see if patients have grabbed their copy of the brochure.

All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.

Meeting called to a close at 5:33pm.
Next Meeting May 24, 2016

Monday, April 18, 2016

April Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, April 26, 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 February 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.    CF ED Day Feedback – All
b.    Patient Survey – Brian
c.    Virtual Clinic Proposal/Online Collaboration – Erick/Brian
Action Items :
Brian/Erick to contact IT for a status updates
d.    CF Encounters – Devin
Action Items :
Collect feedback from Jennifer & Julian and Joan with clinic input; Devin will work on a paragraph to go into the next Newsletter and provide to Zoe
e.    Informational Sheet on Masks Devin
Action Items :
Devin to check with the clinic on their recommendations for which mask(s) should be used
f.     Issue Management Decision Tree – Angel/Monica/Jay/Elika
Action Items :
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.
g.    Passport (card used for CF advocacy for other ER visits) URLs Angel/Linda : New project
h.    Coordination with CFF and external clinic development – Shawn
i.      RPQ/MyHealth update – Jay
Action Items :
Jay emailed the RPQ Form to Christian to be included with MyHealth for digital download/upload. Christian will contact us once they get further along.
j.      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 – 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
5.    Reminders
a.    Publicize council and council activities
b.    Continue to complete volunteer requirements
c.    Future Projects
Hospital RPQ
CF Patient Medical Compendium
6.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting April 25, 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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