Wednesday, April 26, 2017

4-26–2017 Minutes

“4-26–2017 Minutes"

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

Members Absent: Angel, Monica, Lauren, Erick

Council Votes:
March Meeting Minutes Adopted


Project Updates:

  1. Mary Song gave an update on the Patient and Family Partner Program (PFPP) and introduced Bryanna Gallaway, the new Director of Service Excellence. There was also a special shout out of thanks to Ed and Jay for their 100+ hours of volunteer work for Stanford Health!  

B.   Larissa is trying to meet with Elika as well as some of the transplant service line to consider how to best promote transplant education for patients. Colleen will help Larissa set up an appointment with Dr. Mohabir.  The thinking is that transplant educational materials would be available to patients before they need to actually consider transplant options.  It might also be an opportunity to work with the new family advisory council on Transplant.  

C.  Larissa has a mask pamphlet almost ready to go.  She’s waiting for the approval from the CF team.  

D.  CF Encounters.  Jay will contact Devin to get the most recent version.  Abby will take the lead on continuing this project.  

E.  The Mission statement has been updated. Jay now suggests that the bylaws be updated as well. 

F.   Bryanna will help find a Stanford Health contact to help us think about ways RPQ can be delivered to patients without adding extra burden to clinic team.  

G.  File Management Approach: Jay has set up OneDrive for current ACFPFAC files and also for archives.  We will put “CF Encounters” into the Working Project Files.  

H.   Virtual Clinic –Proposal / Online Collaboration: Participants have their Pico/Wing 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. Colleen will get Abby a Pico meter.  Aimee likes using the meter; it’s set up as a game, but she’s not sure what the “numbers” mean.  Brian will check with manufacturer about how to calibrate measurements.  


I. Coordination with CFF and External Development: Shawn will report on a model being used to support struggling clinics which seems to be successful.  

J.  Future Projects
Hospital RPQ
CF Patient Medical Compendium

K.  Publicize clinic activities and try to fulfill those volunteer requirements!  

Meeting called to a close: 6:20 pm


Next Council Meeting May 23 2017

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

Monday, February 27, 2017

ACFPFAC February Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council 
Date/Time: Tuesday, February 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 (5:00 – 5:10)
    Welcome Abby!
    Thanks Angel for the CF Education Day Presentation!
  2. Adopt January minutes (5:10) 
Please review Linda’s minutes on the blog or via her email previously sent to you 
  1. Chair Nominations/Discussions
  2. 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. Coordination with CFF and external clinic development – Shawn
    9. 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.
    10. File Management Approach – Jay
      Initial feedback is good to this point
    11. 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 
CF Patient Medical Compendium
Top requests for clinic – improvement areas or informational needs
  1. Final Comments/Discussion (6:00 – 6:10) 
    Next meeting March 28, 2017
  2. Closed Session (6:10 – 6:30)



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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