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):

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