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