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