Members Present: Brian, Abby, Aimee, Jay, Colleen, Ed, Linda, Shawn,Larissa
Members Absent: Angel, Monica, Lauren, Erick
March Meeting Minutes Adopted
- Mary Song gave an update on the Patient and Family Partner Program (PFPP) and introduced Bryanna Gallaway, the new Director of Service Excellence. There was also a special shout out of thanks to Ed and Jay for their 100+ hours of volunteer work for Stanford Health!
B. Larissa is trying to meet with Elika as well as some of the transplant service line to consider how to best promote transplant education for patients. Colleen will help Larissa set up an appointment with Dr. Mohabir. The thinking is that transplant educational materials would be available to patients before they need to actually consider transplant options. It might also be an opportunity to work with the new family advisory council on Transplant.
C. Larissa has a mask pamphlet almost ready to go. She’s waiting for the approval from the CF team.
D. CF Encounters. Jay will contact Devin to get the most recent version. Abby will take the lead on continuing this project.
E. The Mission statement has been updated. Jay now suggests that the bylaws be updated as well.
F. Bryanna will help find a Stanford Health contact to help us think about ways RPQ can be delivered to patients without adding extra burden to clinic team.
G. File Management Approach: Jay has set up OneDrive for current ACFPFAC files and also for archives. We will put “CF Encounters” into the Working Project Files.
H. Virtual Clinic –Proposal / Online Collaboration: Participants have their Pico/Wing 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. Colleen will get Abby a Pico meter. Aimee likes using the meter; it’s set up as a game, but she’s not sure what the “numbers” mean. Brian will check with manufacturer about how to calibrate measurements.
I. Coordination with CFF and External Development: Shawn will report on a model being used to support struggling clinics which seems to be successful.
J. Future Projects
CF Patient Medical Compendium
K. Publicize clinic activities and try to fulfill those volunteer requirements!
Meeting called to a close: 6:20 pm
Next Council Meeting May 23 2017