07-26-2016 Minutes

“07-26-2016 Minutes"

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

Members Absent: Colleen, Monica, Lauren, Larissa, Erick, Angel

Council Votes: June's Minutes Approved

Thank you, Ed!

The Council thanked Ed for his generous contribution, and we were honored to be associated with it.

Council Officers:

The Council congratulated Angel and Linda on their new roles and greatly appreciate their contribution to the council.  

Proposed Rewording Of Mission Statement and Name Change: Jay mentioned changing the name of the council from "Stanford Adult CF Advisory Council (ACFAC)" to "Stanford Adult CF Patient and Family Advisory Council (ACFPFC)" This would bring the council inline with he Stanford uses for the actual "Patient & Family Partners Program.” As there has not been a quorum, a vote could note be held. Jay will send out an email describing the proposed changes and we will vote via email.

Mission Statement. 

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.

Proposed 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: No updates

B. Virtual Clinic Proposal / Online Collaboration: The plan is to put together a small pilot with volunteers from the council and a contact from the medical community (Stanford or CFF). Shawn will contact CFF personnel who may be interested in helping us.  Brian to reengage with potential hardware partners as well as get Larissa further involved.  

C. CF Encounters: No update.

D. Informational Sheet on Masks: Larissa will send out a proposal before next meeting for council review.  

E. Inpatient Issue Management Decision Tree Brochure: Everyone agreed that the decision tree looks great and should be implemented.  Recommended to contact Meg and ensure that any information shared with her is understood to be confidential.  

F. CF Passport: The latest version will be shared with council for input and approval. We will check on lamination pocket that Jay found (Fry’s) that would be ideal to carry passport in.  

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

H. RPQ – No update. 

I. Clinic Patient Opportunities: New request, find out the concerns of the clinic relative to honoring patient requests for providers to wear masks.  

Meeting called to a close: 6:00pm

Next Council Meeting August 23, 2016