10-25–2016 Minutes

“10-25–2016 Minutes"

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

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

Council Votes: 

September Minutes Approved

Project Updates:

1. 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.

1. Patient Survey: On hold pending Virtual Clinic Project

C. Virtual Clinic Proposal / Online Collaboration: We need to find a clinician to participate.  Colleen will check for interest from CFF at the national conference.  

D. CF Encounters: Larissa is continuing to work on the content provided by Devin.  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 and give the inpatient copies to Meg and Ed in November.  Copies will be in the outpatient clinic for those who will be admitted from there.  

G. CF Passport:  Angel will print the final version of the passport after she confirms how many patients are seen in clinic.  After talking to Meg, Angel will print the appropriate amount and drop off to clinic in November.   

H. Coordination with CFF and external clinic development: We should hear more in January concerning incorporation of advisory boards with clinics.  

I. RPQ/My Health – Jay will report next month.  

J. File Management Approach 

We are still considering DropBox.  Hopefully Jay will investigate this when he feels better.  

K. Clinic-Patient Opportunities

We will informally ask clinic staff to wear a mask in the patient room and see there response. We’ll continue to encourage clinic to support patient requests.  

L. Future Projects:
Hospital RPQ
CF Patient Medical Compendium 

Put a survey on Facebook to help identify top requests for clinic: improvement areas or informational needs.  

M.  Complete volunteer requirements.  Publicize council projects and activities.   

Meeting called to a close: 6:00pm

No meeting in November. 

Next Council Meeting December 13, 2016