'06-28-2016 Meeting Minutes"

"06-28-2016 Minutes"

Members Present: Brian, Angel. Jay, Shawn, Linda

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

Council Votes: May's Minutes Approved

Council Officers: Follow up with Colleen on how to vote by email for Vice Chair and Secretary nominations.

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." Jay to follow up with Joan to see if we have a choice to change our name and what areas do we have to physically make those changes.

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: Brian is looking into Google Docs and Survey Monkey. He will follow up with Joan to see if Volunteer Resources Department has something available for us to use. Brian recommended council members start publicizing the council on the Patient Only Facebook Page. Patients can see what projects are completed or in the progress based on information / need we find on the Patient Only Facebook Page.

B. Virtual Clinic Proposal / Online Collaboration: Brian reached out to Sparo Labs regarding the hand held PFT device "Wings"  to follow up and learn more about the product. Still waiting on a response. Our goal would be to test out the devise (trail run) before it hit the market. Find out does the device connect to a smart phone to track PFT information, is it user friendly, can date from the device be recorded and submitted to clinics, etc...

C. CF Encounters: Follow up next meeting.

D. Informational Sheet on Masks: Follow up next meeting.

E. Inpatient Issue Management Decision Tree Brochure: Jay shared the brochure with Joan who shared it with Patient Relations. Patient Relations offered some feedback. Jay will update the brochure and send it out to the council for review.

F. CF Passport: Angel had a phone meeting with Dr. Mohabir on 05/25/2016 and shared the notes to the council. Linda will reach out to Joan on Stanford Mask Policy. Angel will email CF Passport to Clinic Staff for review.

G. Coordination with CFF and external clinic development : Shawn has completed the project with CFF. CFF hopes to roll out the project to more clinics and hospitals at the beginning of next year.

H. RPQ – Jay shared Christian is not longer working on the MyHealth project. Haven’t heard who his replacement is going to be. Not sure on progress without having a contact. Jay will follow up with Joan.

I. Clinic Patient Opportunities: Angel will send out the Baseline Article Elika wrote last March and send it out to the council.

Action Items:

Angel follow up with Colleen on how to vote by email for Vice Chair and Secretary nomination.

Jay will send out the proposed recommendations to the council for review.

Jay will update the Inpatient brochure and send it out to the council for review. Angel will send out updated brochure to clinic staff for review.

Angel will email clinic staff on CF Passport for review.

Angel will send out the Baseline Article Elika wrote last March and send it out to the council.

Meeting called to a close: 6:00pm
Next Council Meeting July 26, 2016