Wednesday, March 19, 2014

03-19-2014 Minutes

ACFAC Minutes - March 2014

Members Present: Elyse, Victoria, Monica (new member), Jay, Anne, Colleen, Richard, Brian

Members Absent:

Guests Present: Joan Forte-Scott, Zoe Davies

Council Votes: February Minutes Approved

Tasks Assigned:

  1. Monica – Facebook review, develop a project proposal and plan. Elika is a likely contact to work with, please contact her.
  2. Joan – conversation with clinic staff and getting their involvement
  3. Joan – provide update (when appropriate) for cross-domain advisory council, Elyse expressed interest in participating
  4. 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.
  5. Joan– meet with Ann and Meg concerning the strategy for Ann's desire to help with fund-raising for the CF community.
  6. Brian E. – draw up rough description of potential concept for virtual clinic visits, send to Joan

Project Updates: 

MyHealth mockup has been shared with CF Pediatric AC and Pediatric Nursing Staff for additional comments. Opportunity to work with the MyHealth team is a chance to drive valuable change with regards to access to healthcare information within the CF community.

       Preliminary list for MyHealth interviews: Richard, Victoria, Monica, Jay, Kriss B., Brian E.

Other: Joan Forte-Scott presented an overview presentation on Patient and Family Partner Programs, a further evolution of the process of moving from a caregiver centric definition of healthcare to a patient centric one. The current ACFAC, soon to be a longer acronym incorporating an "F" for Family somewhere, was formed with this goal in mind, and going forward Joan and her team will be a valuable partner for us. This appears to be an ideal time to have a much greater impact on the quality of care for CF patients and family than ever before.

Colleen provided an update on Research. Currently only one study is recruiting, which is a good sign that studies are filling up rapidly.

Action Items (as read by vice-chair):

Sunday, March 9, 2014

March 2014 Agenda

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, March 19, 5:00pm-6:30pm
Location: Blake Wilbur Conference Room & 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.

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)
2.  New Member Introduction (5:10 – 5:14)
3.  Adopt November minutes (5:14 – 5:15)
a.    Please review Angel’s minutes on the blog or via her link previously sent to you
4.    Clinical Research Update – Colleen (5:15 – 5:30)
5.    Stanford Patient and Community Engagement (5:30 – 6:00)
Joan Scott, Administrative Director
a.    Overview
b.    MyHealth Coordination Project
6.    Action Items from Previous Meeting (6:00 – 6:15)
a.    Brian E: check on limit to how many people can join our meeting via WebEx
b.    Colleen: Contact Jocelyn and the new nurse practitioner to find out if there can be a commitment to attend quarterly meetings
c.     Angel: Contact Laura to see if the CFRD cards where printed and if they are now available to patients in clinic
d.    Brian E: Contact Joan regarding updates the council needs for their volunteer status
e.    Angel: Contact the Living Breath Foundation to see about a possible donation to the clinic to help patients with travel, gas, and hotel expenses.
f.      Jay: Check the material on the website to make sure the travel routes are up to date.
g.    All council members to check the councils Facebook page to see if recurring issues or concerns are being brought up that the council can take a closer look at.
7.    ACFAC Project Update – (6:15 – 6:20)
8.    Proposals for New Projects (6:20 – 6:30)
9.    Action Item Review (6:30 – 6:35)

Adjournment - Next meeting 4/16/14

WebEx One Touch System (Video):

Administrator Administrator invites you to this meeting.

March 19th CF WebEx One Touch 3/19/2014 11:36 AM
Wed, Mar 19, 4:45 PM | 2 hr 15 min
(UTC-08:00) Pacific Time (US & Canada)

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