"11-17-2015" Meeting Minutes

Adult Advisory Council Meeting Minutes Nov.17

Members present: Jay, Brian, Angel, Ronni, Erick, Ed, Devin, Colleen and Linda Burks.

Welcome to our new member: Linda Burks. Linda is the mom of a soon to be transitioned Son. Additionally, Linda served on the Pediatric Parent Advisory Council for several years.

The September minutes were unanimously adopted.

Project updates:

1.      Virtual Meeting: we are still interested in being a pilot clinic as soon as Stanford IT is ready.

                        ACTION ITEM: Colleen to provide Erick with the name of our contract in IT.

                        ACTION ITEM: Erick to contact IT for a status updates

2.      CF Encounters: No new” updates

3.      Issue Management Tree:

a.      The new color version of the “out-patient brochures” was circulated prior to the meeting.

ACTION ITEM: Angel to contact Meg for confirm that Meg will distribute this form

ACTION ITEM: Colleen to contact Joan: re: budget to print our new project documents on nice heavy weight paper.

4.      My Health – Jay , no new updates

ACTION ITEM: Jay to contact My Health folks to see if they can get our RPQ form in a PDF format uploaded into the MyHealth site.

5.      Mask Information Sheet: This document is in a brochure draft status now. Still need to have Infection Control department and clinic to sign off.

ACTION ITEM: Devin to ask Clinic about a recommendation for which mask(s) they recommend.  

6.      Clinic Patient Opportunities:  Recent issue that has come to the council’s attention: Some medications are unavailable when patients are admitted (Orakambi, Ivacaftor).

ACTION ITEM: Angel to check with Clinic to determine which meds aren’t available and what the process should be for patients when they bring their own medication from home for use while they are in house.

Last Month’s Action item from October

1.      FaceBook issue: Nothing has happened in 3 months. To be further discussed during tonight’s closed session.

2.      File Storage: Joan has identified a location. Logistics still pending.

            ACTION ITEM: Joan to provide details to council.

3.     Dissemination of our documents (CF stories/CF encounters). It was agreed last month that Joan would be in charge of disseminating our de-identified, instructional CF experiences. Devin should touch base with Joan to be sure this is the best way to get  items out to other CF providers, staff members, other clinics, and departments.

New Thought:

Jay reminded old members about our ACFAC pins that identified council members which could help recruit new members or increase our visibility in clinic.

ACTION ITEM: Jay will look into some new options for pins or badges and will present this information next month.

Please continue to complete your volunteer requirements.

Follow Up on Parking Perk Pilot Program:

ACTION ITEM: Angel to check in with Meg to see how the pilot went, was it well received, shall we pursue it further?

            

November Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Tuesday, November 17, 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 Linda Burks!

2.    Adopt September minutes (5:10)

Please review Angel’s minutes on the blog or via her email previously sent to you

3.    Project Update (5:10 – 5:50)

a.    Virtual Meeting Proposal/Online Collaboration – Erick/Brian

b.    CF Encounters – Lauren/Devin

c.    Informational Sheet on Masks – Devin

d.    Infection Control Policy – Shawn/Lauren/Colleen

e.    Issue Management Decision Tree – Angel/Monica/Jay/Elika

f.     Coordination with CFF and external clinic development – Shawn

g.    MyHealth update – Jay

h.    RPQ – Jay

i.      Clinic-Patient Opportunities – Angel/Monica/Elika

4.    Action Items (5:50 – 6:00)

a.    Update on Facebook issue

b.    Joan – update on file storage recommendation

c.    Joan – provide input on how to disseminate information to the unit (Ex: RT, in-patient unit, infusion, etc.) for CF Encounters project

5.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects
CF Patient Medical Compendium

6.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting December 15, 2015

7.    Closed Session (6:10 – 6:30)

Administrator invites you to this meeting. CF Adult Advisory Council Meeting Third Tuesday at 5:00pm Occurs the third Tuesday of every month effective Jul 21, 2015 until Aug 17, 2016. 4:55 PM | 2 hr 5 min (UTC-08:00) Pacific Time (US & Canada) This invitation is for the CF Adult Advisory Council Meeting taking place the third Tuesday of each month starting at 5 pm Pacific Meeting Begins at 5:00 pm WebEx and TelePresence Connections Open at 4:50 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. • 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: a1820 Meeting number: 804383588 Join Using Telepresence Video address: 7527500@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: 804383588 Global call-in numbers Toll-free calling restrictio

"10-20-2015" Meeting Minutes

Attendees: Ed, Joan, Devin, Sarah Hacker (Stanford IT)

Attendees call-in: Colleen, Julian, Brian Eddy, Jay, Shawn, Monica, Demagel

·         The September minutes were adopted

·         The Virtual Meeting Proposal

o   Sarah from IT described the current patient portal at Stanford

§  New functions:

·         Share access – where you can appoint someone to be able to see your medical records

·         Online scheduling – CF clinic would like to be one of the first test clinics

·         Open note – where patient would be able to see MD note, being piloted at the moment

o   CF clinic would to be the placed in the early access group

·         Virtual visits – currently happening in primary care and specialty clinics will roll out in next 6 months

o   Discussion evolved to include the potential for PFT data to be uploaded to enhance the virtual visit

§  Further discussion and investigations will need to take place in order to identify the best device to be universally used

§  Sarah will bring back the enthusiasm of group to get CF clinic in early access group

·         Return patient questionnaire – Jay

o   Form being edited to include an option to opt out to see various team members

o   Our goal is to upload the completed RPQ prior to our visit

§  According to Christine, MyHealth is interested, Sarah will work with MyHealth to get the form uploaded

·         Colleen’s update on infection control

o   Colleen to discuss at Thursday’s Pediatric Advisory meeting

o   Colleen read up potential parent to join this council

§  Everybody in agreement that it was a great idea

§  Colleen to provide all members with new application by the end of the week

·         CF encounters - Devin

o   Question on distribution and final format

§  Form will be used in the weekly huddle with weekly clinical team

§  Still looking for scenarios

·         Question is could we post on facebook page or CF center webpage or Ed Day

·         Joan wants to share with other councils

§  ACTION ITEM – Joan

·         She will disseminate information to the unit (Ex: RT, in-patient unit, infusion, etc.)

·         Issue management – Monica

o   Jay is helping Monica and Angel create the first out-patient document (brochure)

o   Elika questioned how this information will be disseminated to everyone

§  Thought that Meg would be key person to hand out brochure and other avenues could be the facebook page or CF Center website

·         Collaboration with CFF – Shawn

o   No new updates

·         Clinic Patient Opportunities – Monica

o   No new updates

·         Patient only Facebook – Joan

o   Meeting to take place with facebook people: Brian Eddy, Paul Mohabir, Joan

·         PFAC File Storage

o   Joan suggested that we use box for document storage

·         Quarterly Meeting of Dr. Mohabir – Brian Eddy

o   Met to review projects and goals of each project

o   Dr. Mohabir would like to be present at December meeting

§  To present to the council “The State of the Adult CF Clinic”

§  Dr. Mohabir wants help from council to get patients to come to clinic more often and would like to present the research to support claim

§  Dr. Mohabir asked for a task force to work with the clinic

·         Devin is interested

§  We want to continue quarterly meeting with Joan, Paul and Brian

·         MASK Project – Devin

o   Devin has been working with Cheryl

o   Jay to work with Devin on brochure about masks

·         Reminders

o   Publicize the Council

o   Continue your volunteer requirements

o   CF Patient Medical Compendium (Best practice or collection of CF data – Jay is interested in doing this but is unable to begin project for several more months)

Next Council Meeting on November 17, 2015