June 2014 Agenda

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.

Agenda

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

Administrator invites you to this meeting. CF PAC Meeting 6/18/14 5:00-6:00PM Wed, Jun 18, 5:00 PM | 1 hr (UTC-08:00) Pacific Time (US & Canada) This invite is for the CF PAC Meeting Telepresence attendees press the green "Join" button on the tabletop touch screen. (note: if you need to switch TP rooms for this meeting contact UC team) • WebEx attendees would be best to have a hardwired network cable on their machine then click the green "Join Using WebEx' tab within this invite. • Next join the WebEx audio bridge by phone. Do not use computer audio. • WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list. Questions call: Tom Metz Unified Communications 650 492 3675 Join Using WebEx Meeting password: 2014 Meeting number: 344598678 Join Using Telepresence Video address: 9600 Locations: TP-Hoover-Conf RM 508-DP55 Audio Connection Call-in numbers Toll: +1-415-655-0000 Toll-free: 1-877-668-4488 Access code: 344598678 Global call-in numbers Toll-free calling restrictions

If you need the host key or cannot join the meeting using WebEx from this email message, go here: https://stanfordmedot2eft.webex.com/stanfordmedot2eft/j.php?MTID=m454a68997f2ee61e940e68c6af33592a Need more details about joining the meeting using telepresence? https://10.243.78.17/tms/default.aspx?pageId=79&ConfId=13847&View=true Having trouble joining from a telepresence room? Get help. IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation.