Members Present: Brian, Abby, Aimee, Jay, Colleen, Ed, Linda
Members Absent: Shawn, Angel, Larissa, Monica, Lauren, Erick
February Meeting Minutes Adopted
Welcome to Aimee!
A. Thanks to Jay, the Mission Statement has been updated.
Old 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. File Management Approach: Jay is looking into organized group storage for current ACFPFAC files and also for archives. Among others, he’s exploring DropBox, OneDrive, and Google Drive. Jay will try to set up on Google Drive. Aimee has experience with Google Drive and is happy to help with this.
C. Virtual Clinic –Proposal / Online Collaboration: Participants have their Piko meters and are beginning to use them. The main idea is to look for trends in lung function measurements on the home monitor and see how FEV1 trends correspond to changes in health. Participants will informally assess if their measurements reflect health. Ed will gather participants’ observations and reactions.
D. CF Encounters – Larissa and Abby will work together on this.
E. Information Sheets on Masks: Larissa will continue working on this.
F. Coordination with CFF and External Development: Shawn is a patient consultant for their projects.
G. RPQ / MyHealth: Jay will post the newest “fillable” pdf version online and we’ll encourage the clinic to consistently use the hard copies. It would be helpful if the RPQ could be delivered with the My Health appointment reminders.
H. Clinic-Patient Opportunities: In coordination with Elika, Larissa will send out a proposal about a lung transplant class. The class would inform patients, of any health status, about lung transplants.
- Future Projects
Transplant, Early Education
CR Patient Medical Compendium
J. Try to fulfill those volunteer requirements!
Meeting called to a close: 6:10 pm
Next Council Meeting April 25 2017