September Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council 

Date/Time: Tuesday, September 27, 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 

1. Project Update (5:15 – 5:50)
1. Proposed Rewording of Mission Statement/Name change – Jay
   Implementation update
2. Patient Survey – Brian
   Brian will get an account at SurveyMonkey to evaluate its usage.
3. Virtual Clinic Proposal/Online Collaboration – Brian
   Incorporate input to final overview document.  Will be shared with CFRI and CFF (Shawn) to get input and potential support.  Larissa to contact hardware vendor, Brian to provide contact.
4. CF Encounters – Larissa
   Larissa to contact Devin to come up to speed.
5. Informational Sheet on Masks – Larissa
   Has questions for clinic, should be captured this Thursday.  Expand to two deliverables – one the brochure, the second a more detailed presentation that can be used for quarterlies.  Proposal will be posted.
6. Inpatient Issue Management Decision Tree – Angel/Jay/Elika
   Next council meeting is deadline before final publish.  Recommendation to contact Meg and ensure that any information share with her is understood to be confidential. 
7. Passport (card used for CF advocacy for other ER visits) URLs – Angel/Linda
   Logo updated, positive feedback from Meg, no other input received. Deadline will be next council meeting similar to Inpatient brochure.
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.
2. Action Items (5:50 – 6:00) 
1. Colleen – Check with Colleen if you haven’t received badges/ribbons
3. Reminders 
1. Publicize council and council activities 
2. Continue to complete volunteer requirements 
3. Future Projects
   Hospital RPQ 

CF Patient Medical Compendium

1. Final Comments/Discussion (6:00 – 6:10) 
   Next meeting October 25, 2016
2. Closed Session (6:10 – 6:30)
   

8-23-2016 Minutes

“08-23–2016 Minutes"

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

Members Absent: Colleen, Monica, Lauren, Erick

Council Votes: 

July Minutes Approved

At Jay’s suggestion, the council unanimously voted to approve rewording our name and mission statement as follows.  

Current name of the council "Stanford Adult CF Advisory Council (ACFAC)" will be changed to "Stanford Adult CF Patient and Family Advisory Council (ACFPFC)" This will bring the council name in line with the term Stanford uses for "Patient & Family Partners Program.” 

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.

Project Updates:

A. Patient Survey: Brian will look into using Survey Monkey to gather information.  

B. Virtual Clinic Proposal / Online Collaboration: Brian has written a proposal specifying  Goal, Methodolgy, Study Needs, and Expected Results of a preliminary investigative study of virtual clinic appointments.  See https://www.facebook.com/groups/1660501320858920/ for the full proposal. Larissa will contact the hardware company about equipment.  Shawn will contact CFF.  Jay will be in touch with CFRI.  

C. CF Encounters: Larissa will be in touch with Devin about this project.  

D. Informational Sheet on Masks: Larissa will do some more investigation into masks.  She will discuss, with clinic, how extensive the mask informational sheet should be  and also see whether a final version might be published in the CF Center newsletter.  Larissa will then send out a version for us to consider.  

E. Inpatient Issue Management Decision Tree Brochure:  Angel has sent the latest version with new mission statement to clinic. Since she hasn’t had any response, Angel will resend this version to staff for approval. We are waiting to hear from clinic before printing.    

F. CF Passport: Angel sent the latest version to clinic, and Meg enthusiastically approved it.  We are waiting for others from clinic to respond; Angel will resend this passport to clinic along with the decision tree.  

G. Coordination with CFF and external clinic development : No update.  The team is on summer vacation.  

H. RPQ – Jay identified the replacement for Christian, who works on My Health.  Jay will try to make contact before next meeting.  

1. Clinic Patient Opportunities: Angel will seek out the concerns of the clinic relative to honoring patient requests for providers to wear masks.  

J. Jay is looking into file storage on Dropbox where all council members could access files.  Ed will collaborate with Jay on this.  

K.  Be sure to fill the Stanford Volunteer Requirements.  

Meeting called to a close: 6:00pm

Next Council Meeting September 27, 2016

August Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council 

Date/Time: Tuesday, August 23, 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 Angel’s minutes on the blog or via her email previously sent to you 

1. Project Update (5:15 – 5:50)
1. Proposed Rewording of Mission Statement/Name change – Jay
   Results of vote and status update
2. Patient Survey – Brian
   Check with Joan on survey tools
3. Virtual Clinic Proposal/Online Collaboration – Brian
   Plan is to put together a small pilot with volunteers from the council and a contact from the medical community (Stanford or CFF).  Shawn will contact CFF personnel who may be interested in helping us.  Brian to re-engage with potential hardware partners as well as get Larissa further involved.
4. CF Encounters – Larissa
   Larissa coming up to speed
5. Informational Sheet on Masks – Larissa
   Will send out a proposal before next meeting for council review.
6. Inpatient Issue Management Decision Tree – Angel/Monica/Jay/Elika
   Plan to go ahead and implement.  Recommendation to contact Meg and ensure that any information share with her is understood to be confidential. 
7. Passport (card used for CF advocacy for other ER visits) URLs – Angel/Linda
   Resolution of clinic-patient opportunity below will allow the finalization of the passport cards. Jay suggests checking into a laminated pocket that may be useful for the passport card, advertised at Fry’s.
8. Coordination with CFF and external clinic development – Shawn
9. RPQ/MyHealth update – Jay
   Action Items : Jay to contact Joan for Christian replacement
10. Clinic-Patient Opportunities – Angel/Monica/Elika
    Action Items :
    New request, find out the concerns by the clinic relative to honoring patient requests for providers to wear masks.
2. Action Items (5:50 – 6:00) 
1. Joan – update on file storage recommendation
2. Colleen – Check with Colleen if you haven’t received badges/ribbons
3. Reminders 
1. Publicize council and council activities 
2. Continue to complete volunteer requirements 
3. Future Projects
   Hospital RPQ 

CF Patient Medical Compendium

1. Final Comments/Discussion (6:00 – 6:10) 
   Next meeting September 27, 2016
2. Closed Session (6:10 – 6:30)
   

07-26-2016 Minutes

“07-26-2016 Minutes"

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

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

Council Votes: June's Minutes Approved

Thank you, Ed!

The Council thanked Ed for his generous contribution, and we were honored to be associated with it.

Council Officers:

The Council congratulated Angel and Linda on their new roles and greatly appreciate their contribution to the council.  

Proposed Rewording Of Mission Statement and Name Change: Jay mentioned changing the name of the council from "Stanford Adult CF Advisory Council (ACFAC)" to "Stanford Adult CF Patient and Family Advisory Council (ACFPFC)" This would bring the council inline with he Stanford uses for the actual "Patient & Family Partners Program.” As there has not been a quorum, a vote could note be held. Jay will send out an email describing the proposed changes and we will vote via email.

Mission Statement. 

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.

Proposed 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.

Project Updates:

A. Patient Survey: No updates

B. Virtual Clinic Proposal / Online Collaboration: The plan is to put together a small pilot with volunteers from the council and a contact from the medical community (Stanford or CFF). Shawn will contact CFF personnel who may be interested in helping us.  Brian to reengage with potential hardware partners as well as get Larissa further involved.  

C. CF Encounters: No update.

D. Informational Sheet on Masks: Larissa will send out a proposal before next meeting for council review.  

E. Inpatient Issue Management Decision Tree Brochure: Everyone agreed that the decision tree looks great and should be implemented.  Recommended to contact Meg and ensure that any information shared with her is understood to be confidential.  

F. CF Passport: The latest version will be shared with council for input and approval. We will check on lamination pocket that Jay found (Fry’s) that would be ideal to carry passport in.  

G. Coordination with CFF and external clinic development : No update.  The team is on summer vacation.  

H. RPQ – No update. 

I. Clinic Patient Opportunities: New request, find out the concerns of the clinic relative to honoring patient requests for providers to wear masks.  

Meeting called to a close: 6:00pm

Next Council Meeting August 23, 2016