Members Present: Angel, Ed, Linda, Larissa, Shawn
Members Absent: Colleen, Monica, Lauren, Erick, Jay, Brian
August Minutes Approved
- Since Jay is absent, we will wait to follow up on the mission statement wording until the October meeting.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.
B. Patient Survey: Brian will follow up on using survey monkey at the October meeting.
C. Virtual Clinic Proposal / Online Collaboration: Brian has contacted the company about getting the Wing device for measuring FEV1. The company would like to be involved so when we get our schedule finalized we need to let them know a week or so before needing the equipment. Shawn, Jay and Larissa have volunteered to take part. CFRI didn’t want to take part. CFF is willing to take part, only if the clinic agrees to work with this. Brian will follow up with Carol Powers about clinic participation.
D. CF Encounters: Larissa will contact Devin about this project and see what is involved with continuing this project. Angel will follow up with Jennifer Cannon to gain clinic perspective on the project.
E. Informational Sheet on Masks: Larissa will talk with Jennifer Cannon about what are the top three masks for travel.
F. Inpatient Issue Management Decision Tree Brochure: The council enthusiastically approved the brochure. Angel will send the final version to printing.
G. CF Passport: Angel will print the final version of the passport, and Meg will pass them out at clinic.
H. Coordination with CFF and external clinic development : No update now. We should hear more in January.
I. RPQ – RPQ is being distributed at clinic.
J. File Management Approach
We are still considering DropBox. Larissa will contact Mary Song to see what other clinics use and see if there is a Stanford policy on this.
K. Clinic-Patient Opportunities
We will informally ask clinic staff to wear a mask in the patient room and see there response.
L. Future Projects:
CF Patient Medical Compendium
CF Patient Medical Compendium
M. Complete volunteer requirements. Publicize council projects and activities.
Meeting called to a close: 6:00pm
Next Council Meeting October 25, 2016