Wednesday, January 25, 2017

1-24-2017 Minutes

“1-24–2017 Minutes"

Members Present: Brian,Colleen, Ed, Linda,

Members Absent: Angel, Larissa, Monica, Lauren, Erick, Jay, Shawn

Council Votes: 

October Minutes Approved

Project Updates:

A.  Colleen updated us on new Vertex studies starting up.  

B. Jay will update us on implementation of name change at a later date.  

Current Mission Statement: The Stanford Adult CF Advisory Council (ACFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford University Hospital.  The Advisory Council is committed to the betterment and excellence of the entire Cystic Fibrosis Center at Stanford including pediatric, transitional, and adult care Lucile Packard Children's and Stanford University Hospitals.

New Mission Statement: The Stanford Adult Cystic Fibrosis Patient & Family Advisory Council (ACFPFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford Health Care and in The Cystic Fibrosis Center at Stanford including pediatric, transitional and adult care at Lucile Packard Children’s and Stanford University Hospitals.

C.  VirtualClinicProposal/OnlineCollaboration
Angel, Jay, and Shawn need to pick up equipment from Colleen.
Colleen will find three more people to volunteer and give their contact information to Brian.
D. Brian’s time as chair is coming to a close.  Colleen offered that Brian could continue in this role.  Linda will send out an email to have nominations for a new chair. 

E.  CF Encounter: No update

F.  Information Sheet on Masks: Larissa relayed that she has read the latest mask issue posted to the adult cf site (regarding whether Vogmasks actually block germ particles) and plans to bring it up at her next appointment.

G. CF Inpatient Issue Management Decision Tree: Angel reported that Meg is now putting these in with the care packages from the Living Breath Foundation.  CF Outpatient Decision Tree Brochures are doing well.  Angel suggests publicizing again on Patient Only Facebook Page as a reminder to let everyone know they can still pick up their copy in clinic.
H. CF Passports were delivered on 01/18/2017. Meg is starting to hand them out.  Meg will be sharing the CF Passport Idea on a National Level; she mentioned it back in October at the national CF Conference.  Angel offered to write this up for the CF Center newsletter.

I.  Angel is also working on the council presentation for CF Ed Day on March 11.  

J. RPQ/My Health – Jay will report next month.  

K. File Management Approach 
We are still considering DropBox.  Hopefully Jay will investigate this when he feels better.  

L. Clinic-Patient Opportunities
We will discuss at the next meeting.

M. Future Projects:
Hospital RPQ
CF Patient Medical Compendium 
Top Requests for Clinic-Improvement areas or informational needs

N.  Complete volunteer requirements.  Publicize council projects and activities.   

Meeting called to a close: 5:40 pm

Next Council Meeting February 28, 2017

ACFPFAC January Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council 
Date/Time: Tuesday, January 23, 2017, 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 October minutes (5:10) 
Please review Linda’s minutes on the blog or via her email previously sent to you 
  1. Project Update (5:15 – 5:50)
    1. Research status update – Colleen 
    2. Proposed Rewording of Mission Statement/Name change – Jay
      Implementation update
    3. Patient Survey – Brian
      On hold pending Virtual Clinic project
    4. Virtual Clinic Proposal/Online Collaboration – Brian
      Volunteers – Jay, Shawn, Angel, Brian, Ed (clinician role)
    5. CF Encounters – Larissa
      Larissa is continuing to work on the content provided by Devin.  Angel will follow up with Jennifer Cannon to gain clinic perspective on the project.
    6. Informational Sheet on Masks Larissa
      Larissa will talk with Jennifer Cannon about what are the top three masks for travel.  
    7. Inpatient Issue Management Decision Tree – Angel/Jay/Elika
      Status on printing/distribution – Angel investigating print options, hopeful delivery in November
    8. Passport (card used for CF advocacy for other ER visits) URLs Angel/Linda
      Great response, delivered, great job Angel/Linda!
    9. Coordination with CFF and external clinic development – Shawn
    10. RPQ/MyHealth update – Jay
      Identified replacement, will try to contact before next council meeting.  Some inconsistencies have been identified, would like to work with them to resolve.
    11. File Management Approach – Jay
      Initial feedback is good to this point
    12. Clinic-Patient Opportunities – Angel/Elika
  2. Reminders 
    1. Publicize council and council activities 
    2. Continue to complete volunteer requirements 
    3. Future Projects
      Hospital RPQ 
CF Patient Medical Compendium
Top requests for clinic – improvement areas or informational needs
  1. Final Comments/Discussion (6:00 – 6:10) 
    Next meeting February 28, 2017
  2. Closed Session (6:10 – 6:30)