July 2014 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council (CF PAC) Agenda

Date/Time: Wednesday, July 16, 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.   Welcome Mallory!

2.  Adopt June minutes

a.    Please review Angel’s minutes on the blog or via her email previously sent to you

3.    CF PAC Project Update – (5:15 – 5:40)

a.    Joan – Action Item Update

b.    Clinic-Patient Opportunities – Monica/Elika

                                                    i.     Status Update

                                                  ii.     Ongoing Tracking

c.     Outreach to other advisory boards

                                                    i.     Angel/Ann report out

                                                  ii.     Emory feedback

                                                iii.     Cincinnati

d.    MyHealth interviews – Jay, Monica, Victoria, Richard, Brian

                                                    i.     Summary, overall impressions

                                                  ii.     Storyboard – Follow-up interviews, questionnaires

e.    Virtual Meeting Proposal

                                                    i.     Alignment w/ Cincinnati Effort/CFF

4.    Action Items from Previous Meeting (5:40 – 5:55)

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.    Devin: Write a post on the Facebook pages asking for "parking cheats" that anyone knows about. Collect the data, and contact Guest Services, and the CF Clinic to see if these "parking cheats" are legit.

c.     All Members:  Open suggestions "in what ways can CFRI improve and increase resources / outreach programs in the community." Currently CFRI provides The Discovery Series, Community Newsletter, Educational DVD's and the Annual Educations Conference. Think of other ways to reach out?

d.    Covered in agenda

                                                    i.     Participants capture MyHealth interview impressions

                                                  ii.     Brian E: meeting with Joan

                                                iii.     Ann / Angel: Contact and investigate other advisory boards to investigate opportunities for collaboration

5.    Proposals for New Projects (5:55 – 6:10)

a.    Clinic form (MyHealth) – Volunteers?

Adjournment - Next meeting 8/20/14

Administrator Administrator invites you to this meeting. CF PAC Meeting July 16th 5-7p Wed, Jul 16, 5:00 PM | 2 hr (UTC-08:00) Pacific Time (US & Canada) This invite is for the CF PAC Meeting Telepresence attendees please press the green "Join" button on the tabletop touch screen. (note: if you need to switch or add 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: 343495700 Join Using Telepresence Video address: 7527501@stanfordmed.org 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: 343495700 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=m3074b0e890afee088c6dc948940237bd Need more details about joining the meeting using telepresence? https://10.243.78.17/tms/default.aspx?pageId=79&ConfId=14253&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.