"04-26-2016 Meeting Minutes"

ACFAC 04-26-2016

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

Guest: Joan Scott,  Julian Liang

February Minutes Adopted

A. CF Education Day Feedback: Follow up next meeting.

B. Patient Survey: Brian posted a rough draft of the Patient Survey on the ACFAC Only Facebook Page. He is still gathering feedback. Once rough draft is finalized Brian will post the Patient Survey to the Patient Only Facebook Page. Goal is to see how may responses we receive and what information we can gather from the survey. Patient confidentially is most important when we receive responses from patients.

C. Virtual Clinic Proposal / Online Collaboration: Brian received IT contact information from Joan. Brian will contact IT to find out more about the current pilot run of the online virtual clinic at Stanford and how we can participate.

D. CF Encounters: Follow up next meeting.

E. Informational Sheet: Follow up next meeting.

F. Issue Management Decision Tree Brochure: Outpatient Brochure is available at CF Clinic. Angel will post the Outpatient Brochure to the Patient Only Facebook Page to see if patients have grabbed their copy from clinic. Find out if the patients are finding the brochure as a useful piece of resources. Proof#01 of the Inpatient Brochure will be sent out before the next meeting. Goal is for the Inpatient Brochure to be apart of a Inpatient Packet.

G. Passport (Card used for CF Advocacy for other Clinic/ Er Visits): Angel picked up a Pediatric Passport at CF Ed Day. Angel will call the clinic phone to see what the message states regarding the phone number to contact for the Pulmonary Fellow On Call. This information will go on the back of the Passport. Linda will look into the idea of making the Passport Mobile Friendly. The Pediatrics Clinic has an English and Spanish Version. Angel will contact Meg to see if the Adult Clinic needs a Spanish version. Joan mentioned once we know the different langues she can help us translate the verbiage for the passports.

H.Coordination with CFF and External Clinic Development: Shawn will be sending the council an email on how CFF is putting everything in the works.

I. RPQ / MyHealth: Jay has not heard back from Christian regarding uploading the RPQ Form to MyHealth. He will follow up with Christian.

Jay showed everyone via Webex the new ribbon he has been working on. It looks awesome. He will work with Joan to figure out how to mail them out to the council members.

J. Clinic Patient Opportunities: Facebook Topic determine which medicines aren't available during a hospitalization and what the process should be for patients when using their own medications from home. Elika's response "The general rule is that if it's super expensive and difficult to get medication, bring it. Having said that some pancreatic enzymes which are not available don't fall into this category. For simplicity we can use this list of unavailable meds, with the caveat that it can change with time: Xopenex; Kalydeco, Orkambi, Pancreaze, Ultresa, Pertzye and Symbicort. Anything else that is not commonly used will need a case-by-case discussion."
Angel will post response to the Patient Only Facebook Page. In the future this will be part of the inpatient packet along with the inpatient brochure.

File Storage Recommendation: Joan is still working on it.

Joan will follow up with Mary on the status of the councils volunteer requirements. Remember all council members to login in your volunteer hours.


Action Items:

Devin: Feedback from the clinic  CF ED Day Martch 8th CF Encounters Project.

Angel: Post Decision Tree Brochure to Patient Only Facebook Page to see if patients have grabbed their copy of the brochure.

All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.

Meeting called to a close at 5:33pm.
Next Meeting May 24, 2016