Stanford Adult Cystic
Fibrosis Patient Advisory Council
(CF PAC) June Agenda
Date/Time: Wednesday, June 18, 5:00pm-6:00pm
Location: Hoover Pavilion 5th Floor Conference Room& WebEx
Please Note Change in Conference Room
Directions to Hoover Pavilion
From Bayshore US Highway 101 North or South
1. Take the Embarcadero Road/West exit.
2. Follow Embarcadero Road for about two miles.
3. Turn right on El Camino Real and left on Quarry Road.
4. The Hoover Pavilion is located at 211 Quarry Road and will be on your left.
From Highway 280 North or South
1. Take the Sand Hill Road exit and head east.
2. Turn right on Arboretum Road and left on Quarry Road.
3. The Hoover Pavilion is located at 211 Quarry Road and will be on your right.
El Camino Real North or South
1. Turn on Quarry Road.
2. The Hoover Pavilion is located at 211 Quarry Road and will be on your left
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. 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.
1. Introduction (5:00 – 5:10)
a. Hello Ashley
2. Adopt April minutes
a. Please review Angel’s minutes on the blog or via her email previously sent to you
3. ACFAC Project Update – (5:15 – 5:40)
a. MyHealth interviews – Jay, Monica, Victoria, Richard, Brian
i. Round 1 vs. Round 2, overall impressions
b. Clinic-Patient Issues – Monica
i. Potential for regular (quarterly, bi-yearly) “partner” update
c. Virtual Meeting Proposal
i. Thanks for the input!
ii. Update on subsequent activity – CFF
iii. Additional comments
4. Action Items from Previous Meeting (5:40 – 5:45)
a. Colleen – contact the editor of the newsletter regarding a questions and answer section. The council comes up with a general question and staff can answer and have it published in the newsletter.
b. Brian – write up a short summary of ACFAC activity for newsletter
c. Joan – conversation with clinic staff and getting their involvement
d. Joan – provide update (when appropriate) for cross-domain advisory council, Elyse expressed interest in participating
e. Joan – follow-up on alignment between volunteer guidelines and current ACFAC membership. Includes a follow-up for Jay’s issue on information he submitted earlier.
f. Joan – meet with Ann and Meg concerning the strategy for Ann’s desire to help with fund-raising for the CF community.
5. Proposals for New Projects (5:45 – 6:00)
a. Outreach to other advisory boards (adult, any?)
b. Clinic form (MyHealth?)
Adjournment - Next meeting 7/16/14