November 2017 Agenda

Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Tuesday, November 28, 2017, 5:30pm-6:50pm 

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 (5:30 – 5:40)

2.    Adopt October minutes (5:40)

Please review Shawn’s minutes on the blog or via his email previously sent to you

3.    Project Update (5:40 – 6:30)

a.    Family Planning – Abby
Held discussion with social worker, will align with Aimee to get together.  Current approach would be to collect resources and make available to patients in a handout or pamphlet.

b.    Transplant Education – Larissa
In initiation phase, working with Jay, Elika and the transplant team, update next month.

c.    Informational Sheet on Masks – Larissa
Larissa has a rough draft posted to the website, waiting for confirmation by clinic on content. Jay to provide input on formatting, target by next meeting.  Aimee volunteers to help with Microsoft Tools to format final draft.

d.    CF Encounters – Abby
Abby to contact Mary Song on capture and sharing of content that is captured.

e.    Maintenance of Council Web Content – Jay
Will summarize role, will distribute and request volunteer to take over responsibility.

f.     RPQ/MyHealth update – Jay
Brian/Aimee/Abby/Jay have volunteered, will provide updates as participation begins.  Abby has had her initial interview, may be testing new UI.

g.    File Management Approach – Jay
Jay to finalize OneDrive setup, when complete may ask for someone to volunteer to take over. Projects can start to use with Jay’s assistance.

h.    Virtual Clinic Proposal/Online Collaboration – Brian
Volunteers – Shawn still working on getting the Piko-6.  Aimee and Abby to provide initial impressions on value and challenges of home FEV1 measurement to Brian.

i.      Coordination with CFF and external clinic development – Shawn
Mentoring program with Stanford medical students going well.

j.      Clinic-Patient Opportunities – Angel/Elika
Discuss with Clinic on Announcements of Policy Changes that Affect Patient Health

4.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

Hospital RPQ/Inpatient Preparedness

CF Patient Medical Compendium

Top requests for clinic – improvement areas or informational needs

5.    Final Comments/Discussion (6:30 – 6:40) 
Next meeting TBD

6.    Closed Session (6:40 – 7:00)

Administrator invites you to this meeting. CF Adult Advisory Council Meeting Fourth Tuesday at 5:30pm 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  Unified Communications Specialist  Stanford Health Care  Mobile: 650-272-7579  khurley@stanfordhealthcare.org  Unified Communications Team: 650-721-2800  DL-SHCUnifiedCommunications@stanfordhealthcare.org Join Using WebEx 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: 1-650-227-4712 Toll-free: 1-877-668-4493 Access code: 801090638 Global call-in numbers Toll-free calling restrictions

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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

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)