Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Wednesday, January 21, 5:00pm-6:00pm
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.
- Introduction (5:00 – 5:10)
- Adopt December minutes (5:10)
- Please review Angel’s minutes on the blog or via her email previously sent to you
- CF Research Update – (5:10 – 5:20) Colleen
- PFCC Update (5:20 - 5:30) Joan Scott
- CF PAC Project Update – (5:30 – 5:45)
- Virtual Meeting Proposal/Online Collaboration
i. Coordination with CFF and external clinic development – Shawn
ii. MyHealth project status – updates per participants
iii. Stanford Facebook meeting volunteers – Monica
- Clinic-Patient Opportunities – Monica/Angel/Elika
i. List Definition – Status
ii. Send committee an updated version of the Patient Questionnaire form after updating it with suggestions from Elika – Jay
iii. How about general questions – Minnesota protocol for vest, for example.
- Council Website
i. Input for potential improvements
- Action Items from Previous Meeting (5:45 – 6:00)
- Elika: Write up an insert to be published in the next Newsletter regarding the topic of Baseline Determination.
- Elika: Email other NP groups who use a Patient Questionnaire from to see what they find useful.
- Jay: Email Elika the Return Patient Questionnaire form for suggestions.
- Jennifer: Discuss with the New Clinic Manager to see if the ACFAC brochures can be placed at the front desk.
- Brian: If you are able to get into contact with the MyHealth Team pass along the email issues Jennifer is having. Also check to see if there is a way Jennifer can use MyHealth to send patients forms like a patient’s assistance program.
- Brian: Invite Lauren to Join the Facebook Page and provide her background on current projects being worked on
- Post the agenda to the CF Patient Facebook Page
- Publicize Council and council activities – all
- Proposals for New Projects (6:00 – 6:05)
- 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 Feb. 18, 2015