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
