Members Present: Brian,Colleen, Ed, Linda,
Members Absent: Angel, Larissa, Monica, Lauren, Erick, Jay, Shawn
October Minutes Approved
A. Colleen updated us on new Vertex studies starting up.
B. Jay will update us on implementation of name change at a later date.
Current Mission Statement: The Stanford Adult CF Advisory Council (ACFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford University Hospital. The Advisory Council is committed to the betterment and excellence of the entire Cystic Fibrosis Center at Stanford including pediatric, transitional, and adult care Lucile Packard Children's and Stanford University Hospitals.
New Mission Statement: The Stanford Adult Cystic Fibrosis Patient & Family Advisory Council (ACFPFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford Health Care and in The Cystic Fibrosis Center at Stanford including pediatric, transitional and adult care at Lucile Packard Children’s and Stanford University Hospitals.
Angel, Jay, and Shawn need to pick up equipment from Colleen.
Colleen will find three more people to volunteer and give their contact information to Brian.
D. Brian’s time as chair is coming to a close. Colleen offered that Brian could continue in this role. Linda will send out an email to have nominations for a new chair.
E. CF Encounter: No update
F. Information Sheet on Masks: Larissa relayed that she has read the latest mask issue posted to the adult cf site (regarding whether Vogmasks actually block germ particles) and plans to bring it up at her next appointment.
G. CF Inpatient Issue Management Decision Tree: Angel reported that Meg is now putting these in with the care packages from the Living Breath Foundation. CF Outpatient Decision Tree Brochures are doing well. Angel suggests publicizing again on Patient Only Facebook Page as a reminder to let everyone know they can still pick up their copy in clinic.
H. CF Passports were delivered on 01/18/2017. Meg is starting to hand them out. Meg will be sharing the CF Passport Idea on a National Level; she mentioned it back in October at the national CF Conference. Angel offered to write this up for the CF Center newsletter.
I. Angel is also working on the council presentation for CF Ed Day on March 11.
J. RPQ/My Health – Jay will report next month.
K. File Management Approach
We are still considering DropBox. Hopefully Jay will investigate this when he feels better.
L. Clinic-Patient Opportunities
We will discuss at the next meeting.
M. Future Projects:
CF Patient Medical Compendium
CF Patient Medical Compendium
Top Requests for Clinic-Improvement areas or informational needs
N. Complete volunteer requirements. Publicize council projects and activities.
Meeting called to a close: 5:40 pm
Next Council Meeting February 28, 2017