Monday, May 30, 2016

"05-24-2016 Meeting Minutes"

ACFAC 05-24-2016 Meeting Minutes

Members Present: Angel, Devin, Larissa, Linda, Brian, Colleen, Jay,

April Minutes Adopted

A. CF Education Day Feedback: Colleen shared results from CF Ed Day. Very well attended. They had a Spanish interpreter. Some people thought it was the best CF Ed Day ever.

B. Patient Survey: Brian posted the survey on the Patient Only Facebook Page. Feedback extremely light. Waiting to see if we collect more feedback.

C. Virtual Clinic Proposal / Online Collaboration: Virtual Clinic Visits. Stanford currently has a pilot in the works. Brian has reached out to see if we can participate in a pilot run but has not received any feedback. Thinking about changing directions and contacting the companies who sell the at home lung function test. Researching to see if the device can work with a Virtual Clinic Visit and how a patient would upload their PFT score. Larissa volunteered to help Brian with this project.

D. CF Encounters: Devin will follow up with Jennifer and Julian at his next clinic appointment for input. Devin to write up status on project for another council member to pick up the project.

E. Informational Sheet on Masks: Devin sent  a draft of the Informational Sheet on Masks to all council members. Clinic needs to review and finalize it. Once list is finalized making it available on the Patient Only Facebook Page. Larissa volunteered to assist with this project.

F. Issue Management Decision Tree Brochure: Jay emailed Proof#01 Inpatient Brochure to everyone for feedback.

G. Passport (Card used for CF Advocacy for other Clinic/ Er Visits): Linda and Angel sent out Proof#01 of the Adult Cystic Fibrosis Passport to the council for feedback. Jay is working adding the ACFAC logo on the passport. Linda is currently working on the idea of making the passport Mobile Friendly. Feedback Received:
Elika via email “ the approved isolation for CF patients is Contact only: gown and glove for providers. Droplet is only for cases of suspected viral infections (fle etc) and should be determined by the physician/NP. Remove “Droplet” and Mask”. For the contact phone number add daytime 7am – 5pm contacts as the CF Ghost Pager and Plumonary Consult Fellow only for issues after 5pm."
Angel spoke to Dr. Mohabir regarding the Adult Cystic Fibrosis Passport. First off he loves the idea and thinks it will be a great resource for CF Patients. Regarding the “masks” the hospital policy embedded multi infection control deemed masks not recommended for a provider to wear. The only reason a provider would wear a mask is if the patient had a virus “Droplet”. If a patient wants to wear a mask during their clinic appointment that is fine, but Stanford Policy does not recommend the provider to wear a mask".

H. Coordination with CFF and External Clinic Development:  Follow up next meeting.

I. RPQ / MyHealth: Jay submitted the latest RPQ Form to Christian at MyHealth. No response back.

J. Clinic Patient Opportunities: Send Brian Baseline Determination Article. Work with Carol Powers on gathering a list of the latest treatment supplies, devices, etc.. quarterly to provide a list for patients so they know the new and exciting items for their CF Care.  Publish in CF Newsletter.

File Storage Recommendation: Joan mentioned via email they are making progress toward getting volunteers (patient and family partners included) access to the Stanford Box.

Action Items:
Jay: Post RPQ Form on Patient Only Facebook Page.

Devin: Email Larissa the Draft on the  Informational Sheet Draft on Mask..

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

Angel : Post the Prescription List of medicines approved by Elika to Patient Only Facebook Page so patients know what medicines to bring when in house.

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 6:20pm.
Next Meeting June 28, 2016

Tuesday, May 17, 2016

May Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, May 24, 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 April minutes (5:10)
Please review Angel’s minutes on the blog or via her email previously sent to you
3.    Report on CF Education Day (5:10-5:15) – Colleen
4.    Project Update (5:15 – 5:50)
a.    Patient Survey – Brian
b.    Virtual Clinic Proposal/Online Collaboration – Brian
Action Items :
Brian to provide update on status
c.    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
d.    Informational Sheet on Masks Devin
Action Items :
Complete Documentation
e.    Issue Management Decision Tree – Angel/Monica/Jay/Elika
Action Items :
Capture input for inpatient decision flow for inpatient form.  Initially work with contact from Jay.
f.     Passport (card used for CF advocacy for other ER visits) URLs Angel/Linda : Angel to capture information to be posted and develop a proof.
g.    Coordination with CFF and external clinic development – Shawn
h.    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.
i.      Clinic-Patient Opportunities – Angel/Monica/Elika
Action Items :
List to be reviewed and documented for future use, at minimum posted to Facebook page.
5.    Action Items (5:50 – 6:00)
a.    Joan – update on file storage recommendation
b.    Jay – Will distribute ribbons for Volunteer badges
6.    Reminders
a.    Publicize council and council activities
b.    Continue to complete volunteer requirements
c.    Future Projects
Hospital RPQ
CF Patient Medical Compendium
7.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting June 28, 2016
8.    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 Jan 31, 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

• Telepresence attendees please press the join button on your touch screen to connect.
• WebEx attendees please click the green "Join Using WebEx' tab within this invite.
• Next join the WebEx audio bridge by phone. Do not use computer audio.
• Please mute your phone until you are ready to speak
• WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list.

Questions call:
Kevin Hurley
Unified Communications Specialist
Stanford Health Care
Mobile: 650-272-7579

Unified Communications Team: 650-721-2800
Meeting password: w1084
Meeting number: 801090638

Join Using Telepresence
Video address:
TP-900 Blake Wilbur-Tumor Board W1084

Audio Connection
Call-in numbers
Toll: 1-650-479-3208
Toll-free: 1-877-668-4493
Access code: 801090638