8-23-2016 Minutes

“08-23–2016 Minutes"

Members Present: Brian, Ed, Jay, Linda, Angel, Larissa, Shawn

Members Absent: Colleen, Monica, Lauren, Erick

Council Votes: 

July Minutes Approved

At Jay’s suggestion, the council unanimously voted to approve rewording our name and mission statement as follows.  

Current name of the council "Stanford Adult CF Advisory Council (ACFAC)" will be changed to "Stanford Adult CF Patient and Family Advisory Council (ACFPFC)" This will bring the council name in line with the term Stanford uses for "Patient & Family Partners Program.” 

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.

Project Updates:

A. Patient Survey: Brian will look into using Survey Monkey to gather information.  

B. Virtual Clinic Proposal / Online Collaboration: Brian has written a proposal specifying  Goal, Methodolgy, Study Needs, and Expected Results of a preliminary investigative study of virtual clinic appointments.  See https://www.facebook.com/groups/1660501320858920/ for the full proposal. Larissa will contact the hardware company about equipment.  Shawn will contact CFF.  Jay will be in touch with CFRI.  

C. CF Encounters: Larissa will be in touch with Devin about this project.  

D. Informational Sheet on Masks: Larissa will do some more investigation into masks.  She will discuss, with clinic, how extensive the mask informational sheet should be  and also see whether a final version might be published in the CF Center newsletter.  Larissa will then send out a version for us to consider.  

E. Inpatient Issue Management Decision Tree Brochure:  Angel has sent the latest version with new mission statement to clinic. Since she hasn’t had any response, Angel will resend this version to staff for approval. We are waiting to hear from clinic before printing.    

F. CF Passport: Angel sent the latest version to clinic, and Meg enthusiastically approved it.  We are waiting for others from clinic to respond; Angel will resend this passport to clinic along with the decision tree.  

G. Coordination with CFF and external clinic development : No update.  The team is on summer vacation.  

H. RPQ – Jay identified the replacement for Christian, who works on My Health.  Jay will try to make contact before next meeting.  

1. Clinic Patient Opportunities: Angel will seek out the concerns of the clinic relative to honoring patient requests for providers to wear masks.  

J. Jay is looking into file storage on Dropbox where all council members could access files.  Ed will collaborate with Jay on this.  

K.  Be sure to fill the Stanford Volunteer Requirements.  

Meeting called to a close: 6:00pm

Next Council Meeting September 27, 2016