Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Wednesday, December 17, 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.
- Introduction (5:00 – 5:10)
- Welcome Lauren Carton!
- Adopt October minutes (5:10)
- Please review Angel’s minutes on the blog or via her email previously sent to you
- CF PAC Project Update – (5:10 – 5:25)
- Clinic-Patient Opportunities – Monica/Angel/Elika
i. Open Issues (Oral Antibiotics, Baseline determination)
ii. List Definition – Status
- 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
- Action Items from Previous Meeting (5:25 – 5:50)
- 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
- Send committee an updated version of the Patient Questionnaire form after updating it with suggestions from Elika - Jay
- Follow up with Joan to investigate "parking cheats" for "unique cases" – Brian
- Remind member about Stanford volunteer time input request – Brian/Angel
- Follow up with committee members what extra steps they may have to complete to become full Stanford Volunteers. Also find out what acronyms like "CRIM" (sp?) mean - Brian/Angel
- After trip to Israel, follow up with MyHealth group concerning - Brian
- Follow up with Elika regarding the policy regarding calling the clinic for antibiotics and, when appropriate, baseline determination – Angel and Monica
- Draft an accomplishments and history section for the website – Jay
- Review CF Advisory website to see how the website may be improved - All Send suggestions to Jay.
- Follow up with CF center at Dartmouth and CFF about external clinic development, keep Brian (and council) informed of progress – Shawn
- Monitor Stanford patient FB group and note issues that people bring up that the council may be able to address – Devin
- Reminders – Improving our Visibility and Increasing Membership Status
- Posting the agenda to the CF Patient Facebook Page - Ongoing
- Posting on our own personal Facebook Pages to see if we can spark the interest – all
- Look at the Council website and think of ways to revamp it – Jay, all
- Proposals for New Projects (5:50 – 6:00)
- 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 Jan. 21, 2015