ACFPFAC December Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council
Date/Time: Tuesday, December 13, 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.
Agenda
1. Introduction(5:00–5:10)
2. AdoptOctoberminutes(5:10)
Please review Linda’s minutes on the blog or via her email previously sent
to you
3. ProjectUpdate(5:15–5:50)

1. Researchstatusupdate–Colleen
   
2. ProposedRewordingofMissionStatement/Namechange–Jay
   Implementation update
   
3. Patient Survey – Brian
   On hold pending Virtual Clinic project
   
4. VirtualClinicProposal/OnlineCollaboration–Brian Volunteers – Jay, Shawn, Angel, Brian, Ed (clinician role)
   
5. CFEncounters–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. InpatientIssueManagementDecisionTree–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, checking on number required which will lead to the number that needs to be printed. Hope to coordinate with decision tree distribution
   

9. Coordination with CFF and external clinic development – Shawn Likely no updates until January on incorporation of advisory boards
   
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
    DropBox has a potential solution for file management, will
    investigate further with assistance from Ed.
    
12. Clinic-Patient Opportunities – Angel/Elika
    New request, find out the concerns by the clinic relative to honoring patient requests for providers to wear masks. Will continue to try and push the clinic to support when requested.
    

4. Reminders
a. Publicizecouncilandcouncilactivities

2. Continue to complete volunteer requirements
   
3. Future Projects
   Hospital RPQ
   CF Patient Medical Compendium
   Top requests for clinic – improvement areas or informational needs
   

5. Final Comments/Discussion (6:00 – 6:10)
Next meeting January 23, 2017
6. ClosedSession(6:10–6:30)

Administrator invites you to this meeting.

CF Adult Advisory Council Meeting

Join Using WebEx

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 password: w1084 Meeting number: 801090638
Join Using Telepresence
SIP:
6507362631@stanfordmed.org

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
Unified Communications Specialist Stanford Health Care
Mobile: 650-272-7579 khurley@stanfordhealthcare.org
Unified Communications Team: 650-721-2800
DL-SHCUnifiedCommunications@stanfordhealthcare.org

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 Access code: 801090638 Global call-in numbers Toll-free calling restrictions

H.323:

10-25–2016 Minutes

“10-25–2016 Minutes"

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

Members Absent: Colleen, Larissa, Monica, Lauren, Erick, Jay

Council Votes: 

September Minutes Approved

Project Updates:

1. Since Jay is absent, we will wait to follow up on the mission statement wording until the October meeting.  

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.

1. Patient Survey: On hold pending Virtual Clinic Project

C. Virtual Clinic Proposal / Online Collaboration: We need to find a clinician to participate.  Colleen will check for interest from CFF at the national conference.  

D. CF Encounters: 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.  

E. Informational Sheet on Masks: Larissa will talk with Jennifer Cannon about what are the top three masks for travel.  

F. Inpatient Issue Management Decision Tree Brochure:  The council enthusiastically approved the brochure.  Angel will send the final version to printing and give the inpatient copies to Meg and Ed in November.  Copies will be in the outpatient clinic for those who will be admitted from there.  

G. CF Passport:  Angel will print the final version of the passport after she confirms how many patients are seen in clinic.  After talking to Meg, Angel will print the appropriate amount and drop off to clinic in November.   

H. Coordination with CFF and external clinic development: We should hear more in January concerning incorporation of advisory boards with clinics.  

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

J. File Management Approach 

We are still considering DropBox.  Hopefully Jay will investigate this when he feels better.  

K. Clinic-Patient Opportunities

We will informally ask clinic staff to wear a mask in the patient room and see there response. We’ll continue to encourage clinic to support patient requests.  

L. Future Projects:
Hospital RPQ
CF Patient Medical Compendium 

Put a survey on Facebook to help identify top requests for clinic: improvement areas or informational needs.  

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

Meeting called to a close: 6:00pm

No meeting in November. 

Next Council Meeting December 13, 2016

ACFPFAC October Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, October 25, 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.

Agenda
1. Introduction(5:00–5:10) 2. Adopt July minutes (5:10)
Please review Linda’s minutes on the blog or via her email previously sent
to you
3. ProjectUpdate(5:15–5:50)

1. ProposedRewordingofMissionStatement/Namechange–Jay Implementation update
   
2. PatientSurvey–Brian
   On hold pending Virtual Clinic project
   
3. Virtual Clinic Proposal/Online Collaboration – Brian
   Would like to find clinician to participate, potential partners are CFF and Colleen will check for interest at the conference
   
4. CFEncounters–Larissa
   Larissa will contact Devin about this project and see what is involved with continuing this project. Angel will follow up with Jennifer Cannon to gain clinic perspective on the project.
   
5. Informational Sheet on Masks – Larissa
   Larissa will talk with Jennifer Cannon about what are the top three masks for travel.
   
6. Inpatient Issue Management Decision Tree – Angel/Jay/Elika Status on printing/distribution.
   
7. Passport (card used for CF advocacy for other ER visits) URLs – Angel/Linda
   Status on printing/distribution.
   
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
    DropBox has a potential solution for file management, will
    investigate further with assistance from Ed.
    
11. Clinic-Patient Opportunities – Angel/Elika
    New request, find out the concerns by the clinic relative to honoring patient requests for providers to wear masks. Will continue to try and push the clinic to support when requested.
    

4. Reminders
a. Publicizecouncilandcouncilactivities

2. Continue to complete volunteer requirements
   
3. Future Projects
   Hospital RPQ
   CF Patient Medical Compendium
   

5. Final Comments/Discussion (6:00 – 6:10)
Next meeting November 22, 2016
6. ClosedSession(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 Aug 23, 2016 until Jan 23, 2018.
4:40 PM | 2 hr 20 min
(UTC-08:00) Pacific Time (US & Canada)

Meeting password: w1084 Meeting number: 801090638

Join Using WebEx

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
Unified Communications Specialist Stanford Health Care
Mobile: 650-272-7579 khurley@stanfordhealthcare.org
Unified Communications Team: 650-721-2800
DL-SHCUnifiedCommunications@stanfordhealthcare.org

SIP:
6507362631@stanfordmed.org
H.323:
6507362631@stanfordmed.org
Locations:
TP-900 Blake Wilbur-Tumor Board W1084

Join Using Telepresence

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

09-27–2016 Minutes

“09-27–2016 Minutes"

Members Present: Angel, Ed, Linda, Larissa, Shawn

Members Absent: Colleen, Monica, Lauren, Erick, Jay, Brian

Council Votes: 

August Minutes Approved

Project Updates:

1.  Since Jay is absent, we will wait to follow up on the mission statement wording until the October meeting.  
   
   
   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.

B.  Patient Survey: Brian will follow up on using  survey monkey at the October meeting.  

C. Virtual Clinic Proposal / Online Collaboration: Brian has contacted the company about getting the Wing device for measuring FEV1.  The company would like to be involved so when we get our schedule finalized we need to let them know a week or so before needing the equipment. Shawn, Jay and Larissa have volunteered to take part.  CFRI didn’t want to take part.  CFF is willing to take part, only if the clinic agrees to work with this.  Brian will follow up with Carol Powers about clinic participation.  

D. CF Encounters: Larissa will contact Devin about this project and see what is involved with continuing this project.  Angel will follow up with Jennifer Cannon to gain clinic perspective on the project.  

E. Informational Sheet on Masks: Larissa will talk with Jennifer Cannon about what are the top three masks for travel.  

F. Inpatient Issue Management Decision Tree Brochure:  The council enthusiastically approved the brochure.  Angel will send the final version to printing.    

G. CF Passport:  Angel will print the final version of the passport, and Meg will pass them out at clinic.    

H. Coordination with CFF and external clinic development : No update now.  We should hear more in January.  

I. RPQ – RPQ is being distributed at clinic.   

J. File Management Approach 

We are still considering DropBox.  Larissa will contact Mary Song to see what other clinics use and see if there is a Stanford policy on this.  

K. Clinic-Patient Opportunities

We will informally ask clinic staff to wear a mask in the patient room and see there response. 

L. Future Projects:
Hospital RPQ
CF Patient Medical Compendium 

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

Meeting called to a close: 6:00pm

Next Council Meeting October 25, 2016