Stanford Adult Cystic
Fibrosis Patient Advisory Council
Date/Time: Wednesday, October 15, 5:00pm-6:15pm
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, which at this
time allow only one individual with CF in the meeting room. This week that person will be Angel. 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
- Introduction
(5:00 – 5:10)
- Adopt
September minutes (5:10)
- Please
review Angel’s minutes on the blog or via her email previously sent to
you
- Council
Time Commitment Concerns – Discussion (5:30 – 5:40)
- Proposal
on bi-monthly member meetings
- Improving
our Visibility and Increasing Membership Status (5:40 – 5:50)
- Posting
the agenda to the CF Patient Facebook Page - Complete
- Getting
Meg and Jen on board to spread the word
- Posting
on our own personal Facebook Pages to see if we can spark the interest – all
- Contact
Cathy Hernandez so she can post the agenda each month on the Stanford
webpage as well as the Stanford CF Center Facebook page – Colleen
- E-mail
blast that goes out change name of meeting from CF Meeting to CF Adult
Advisory Council – Colleen
- Put information and application forms about the council
in the waiting room at clinic –
Colleen
- Council
members that know anyone with CF that wants to join direct them to
Colleen – all
- Look
at the Council website and think of ways to revamp it – Jay, all
- CF
PAC Project Update – (5:50 – 6:00)
- Clinic-Patient
Opportunities – Monica/Angel/Elika
i. List Definition – Status
ii. Ongoing Tracking (Oral
Antibiotics, Baseline determination)
- Virtual
Meeting Proposal/Online Collaboration
i. CFF – Coordination with
CFF and external clinic development – Brian E., Shawn
ii. MyHealth project status – updates per participants
iii. Facebook meeting
volunteers – Monica
- Action
Items from Previous Meeting (6:00 – 6:10)
- Contact both Dr. Milla and Dr. Mohabir regarding the
new infection control policy change – Colleen
- Check on the status with Jennifer to see if the
MyHealth team has been in contact with her regarding emails – Angel
- Check on the status of the Newsletter article regarding
new changes and policy from the clinic – Angel
- Contact Camille, Elika or Meg regarding updates on
Patient Questioner Form – Jay
- Follow up with Joan to investigate "parking
cheats" for "unique cases" – Brian
- Proposals
for New Projects (6:10 – 6:15)
- Pending
Future Project: Joan and Brian E to contact Christine from MyHealth to see about a possible
collaboration between Epic Synopsis and MyHealth
Adjournment - Next meeting 11/19/14
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