Wednesday, March 29, 2017

ACFPFAC April Meeting Agenda


Stanford Adult Cystic Fibrosis Patient & Family Advisory Council 
Date/Time: Tuesday, April 25, 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. 
Agenda 
  1. Introduction (5:00 – 5:10) 
  2. Adopt March minutes (5:10) 
Please review Linda’s minutes on the blog or via her email previously sent to you 
  1. Chair Nominations/Discussions
    Brian will continue on until a new nominee is identified
  2. Project Update (5:15 – 5:50)
    1. Transplant Education – Larissa 
    2. Informational Sheet on Masks Larissa
      Larissa will update and share latest version  
    3. CF Encounters – Larissa/Abby
      Abby to check with Larissa on participating in project
    4. Proposed Rewording of Mission Statement/Name change – Jay
      Implementation update
    5. RPQ/MyHealth update – Jay
      Continues to support.
    6. File Management Approach – Jay
      DropBox has been evaluated, recommended to link to Council Web Page, Jay to continue evaluation, also to include OneDrive.
    7. Virtual Clinic Proposal/Online Collaboration – Brian
      Volunteers – Jay, Shawn, Angel, Brian, Aimee and Erik are ready to start!  Ed will act in the clinician role.
    8. Coordination with CFF and external clinic development – Shawn
      One project approved, Shawn to continue support
    9. Clinic-Patient Opportunities – Angel/Elika
      Update
  3. Reminders 
    1. Publicize council and council activities 
    2. Continue to complete volunteer requirements 
    3. Future Projects
Hospital RPQ/Inpatient Preparedness
CF Patient Medical Compendium
Top requests for clinic – improvement areas or informational needs
  1. Final Comments/Discussion (6:00 – 6:10) 
    Next meeting May 23, 2017
  2. Closed Session (6:10 – 6:30)


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Tuesday, March 28, 2017

3-28–2017 Minutes

“3-28–2017 Minutes"

Members Present: Brian, Abby, Aimee, Jay, Colleen, Ed, Linda

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

Council Votes:
February Meeting Minutes Adopted

Welcome to Aimee!

Project Updates:

A.  Thanks to Jay, the Mission Statement has been updated.   
       
Old 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.


B. File Management Approach: Jay is looking into organized group storage for current ACFPFAC files and also for archives. Among others, he’s exploring DropBox, OneDrive, and Google Drive.  Jay will try to set up on Google Drive.   Aimee has experience with Google Drive and is happy to help with this.  

C.   Virtual Clinic –Proposal / Online Collaboration: Participants have their Piko meters and are beginning to use them.  The main idea is to look for trends in lung function measurements on the home monitor and see how FEV1 trends correspond to changes in health. Participants will informally assess if their measurements reflect health.  Ed will gather participants’ observations and reactions.  
D. CF Encounters – Larissa and Abby will work together on this. 

E. Information Sheets on Masks: Larissa will continue working on this. 

F. Coordination with CFF and External Development: Shawn is a patient consultant for their projects.  

G. RPQ / MyHealth: Jay will post the newest “fillable” pdf version online and we’ll encourage the clinic to consistently use the hard copies.  It would be helpful if the RPQ could be delivered with the My Health appointment reminders.  

H. Clinic-Patient Opportunities:  In coordination with Elika, Larissa will send out a proposal about a lung transplant class. The class would inform patients, of any health status, about lung transplants.
  1. Future Projects
Transplant, Early Education
Hospital RPQ
CR Patient Medical Compendium

J.  Try to fulfill those volunteer requirements!  

Meeting called to a close: 6:10 pm


Next Council Meeting April 25 2017

Saturday, March 4, 2017

ACFPFAC March Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, March 28, 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.
Agenda
1. Introduction(5:005:10)
2. Adopt February minutes (5:10)

Please review Linda’s minutes on the blog or via her email previously sent
to you
3. ChairNominations/Discussions
Jay to provide decision on acceptance of nomination
4. ProjectUpdate(5:155:50)
  1. ResearchstatusupdateColleen
  2. ProposedRewordingofMissionStatement/NamechangeJay
    Implementation update
  3. Virtual Clinic Proposal/Online Collaboration Brian Volunteers Jay, Shawn, Angel, Brian, Ed (clinician role) All have devices and ready to start
  4. CFEncountersLarissa
    Abby to check with Larissa on participating in project
  5. Informational Sheet on Masks Larissa Larissa will update and share latest version
  6. Coordination with CFF and external clinic development Shawn One project approved, Shawn to continue support
  7. RPQ/MyHealthupdateJay Continues to support.
  8. FileManagementApproachJay
    DropBox has been evaluated, recommended to link to Council Web
    Page, Jay to continue evaluation, also to include OneDrive.
  9. Clinic-Patient Opportunities Angel/Elika Update
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5. Reminders
a. Publicizecouncilandcouncilactivities
  1. Continue to complete volunteer requirements
  2. Future Projects
    Hospital RPQ/Inpatient Preparedness
    CF Patient Medical Compendium
    Top requests for clinic improvement areas or informational needs
6. Final Comments/Discussion (6:00 6:10)
Next meeting April 25, 2017
7. ClosedSession(6:106:30)
Administrator invites you to this meeting.
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CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm
Occurs the fourth Tuesday of every month effective Aug 23, 2016 until Jan 23, 2018.
4:40 PM | 2 hr 20 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 4:40 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
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Meeting password: w1084 Meeting number: 801090638
Join Using Telepresence
SIP:
6507362631@stanfordmed.org
H.323:
6507362631@stanfordmed.org
Locations:
TP-900 Blake Wilbur-Tumor Board W1084
Audio
Connection
Call-in numbers
Toll: 1-650-479-3208 Toll-free: 1-877-668-4493
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Join Using WebEx
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Unified Communications Specialist Stanford Health Care
Mobile: 650-272-7579
khurley@stanfordhealthcare.org
Unified Communications Team: 650-721-2800
DL-SHCUnifiedCommunications@stanfordhealthcare.org
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Access code: 801090638 Global call-in numbers Toll-free calling restrictions
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2-28–2017 Minutes

“2-28–2017 Minutes"

Members Present: Brian, Abby, Jay, Shawn, Angel

Members Absent: Larissa, Monica, Lauren, Erick, Colleen, Ed, Linda,

Council Votes: None

Project Updates:

A.     Virtual Clinic Proposal / Online Collaboration: Council members who are participating in the trial run can use the app “Track My Medical Records” to keep track of FEV1 trends with graphs with trends .
    
B. CF Encounters :  Follow up next meeting. Abby interested in participating.

C. Information Sheets on Masks: Clinics back East are not having patients wearing mask. Shawn to send out email of masks description from Devin to Larissa.

D. Inpatient/Outpatient RPQ and Masks Sheet: PDF’s will be posted to the Patient Only Facebook Page, to remind patients the project we have completed and the recourse tools that are available to them in clinic. “Great information for you in preparation for your next clinic visit.....”

E. CFF and External Development: Shawn still visits with them every other month, getting updates on the status.

F. RPQ / MyHealth: Jay has signed up for MyHealth improvement and is waiting to hear back from them.

G, File Management: Council’s email to be linked to the Dropbox account Jay has set up for the council. Abby mentioned looking into OneDrive for file management.

Meeting called to a close:


Next Council Meeting March 28, 2017