Wednesday, May 20, 2015

"05-20-2015 Minutes"

"05-20-2015 Minutes"

Members Present: Brian, Devin, Angel, Shawn, Jay,

Members Absent: Colleen, Monica, Lauren, Ed

Guests: Caron

Council Votes: April's Minutes Approved

Project Updates:

CF Encounters: Lauren and Devin have received 10 valuable encounter stories. Once each story has been re-written they will contact each individual who provided a story to verify all the information. This will allow the individual to add any additional information to their encounter story. Devin asked the council for feedback about changing the vision of the project to reflect positive encounter stories.
Devin explained if we just present negative stories it might be frustrating or hurt someones feelings. Since the goal of the project is from an education perspective, no one should take offense to the encounter stories presented. If the encounter story can  be presented in a unique way by identifying the good deed into a learning experience, then yes positive encounter stories can be used.

Issue Management Protocol: May's Support Group Session focused on the Issue Management Protocol Project. Monica and Angel received a lot of feedback. In keeping with the rules of the Support Group Session all names and attendees are kept confidential. Our next step is to contact Meg and go over the notes from Support Group Session and gather feedback from Meg on a clinicians point of view. After we received all data we will collaborate with the council and thus create a "Decision Tree Flyer" for patients to use in clinic or in the hospital.

Coordinating with CFF and External Clinic Development: Update on the C3N Project. Shawn shared with the council the group is gearing up for a two day virtual conference next week. The conference is being held in the Washington/Maryland area. It's under the direction of CFF. Shawn will send out an email to the council members regarding the topics being discussed at next weeks virtual conference. He also learned CFF has their own Patient Questionnaire Form that gets sent out to all clinics twice a year. The form includes general questions about the clinic and helps clinics accreditation. The form is suppose to be handed out to patients from the clinics. Once Shawn receives the form he will share it with the council and make sure the clinic has a copy as well.

Clinic Patient Opportunities:  The Baseline FEV-1 Determination had made it's debut in the Cystic Fibrosis Center Newsletter. Just a quick refresher on how this topic came about; the council presented the topic to Elika a few months after we noticed a post in the Patient Only Facebook Page. To view the article click on the link :

Monica shared with Angel via email during the last few clinic visits she was not given the Return Patient Questionnaire Form to fill out. She wanted to bring this topic up to the council so we can help education the front desk staff. Other council members have also noticed they have not been receiving the form on clinic days. Brian checked out MyHealth to see if there is a section to upload the form so patients can download the form before their clinic visits. There is a section, and he sent out an email to the MyHealth team and is awaiting a response back. Angel checked with the clinic staff regarding this topic and was given the contact of Linda Green (Unit Manager). Caren will send Angel, Linda Green's contact information so we can touch base with her and solve this issue.

New Project: Brian mentioned with the FDA expected to make a decision on the approval of lumacaftor/Ivacaftor by July 5th, maybe we should look into contacting Vertex about finding out ways to help patients fight the insurance battle. The council agreed this is a great idea. Brian and Angel will reach out to both Vertex and the clinic to gather feedback.

Council Website: The Cystic Fibrosis Center Stanford Website is new and improved. Check it out!!

Caren shared with the council her last day is June 19th. We are sad to see her go. A big THANK YOU for all your hard work, and support throughout the years. We very much appreciate it!

Action Item Follow Ups from Previous Meeting:

Colleen and Brian: Colleen contacted Karrie regarding a Protocol for the CF Conference Room. Karrie is going to contact the IT group to see if starting Web Ex system off site is possible. Karrie will follow up with Colleen. A temporary solution if we are having problems with the system, is to detail the problem and email it to Karrie so she can follow up. Caren shared with the council Kevin is the IT guy to contact. His email address is on the bottom of our agendas. Caren will provide us with his contact information. If no one is in the room (staff wise) we can still have our meetings through Web-Ex Audio. Teleconference is if someone is in the room and starts the meeting by pressing the green button.

Angel: Sent Mary Song an email  regarding Volunteer Requirements to make sure the council is up to date. Colleen was copied on the email. Mary Song is scheduled to be in contact with each individual council member regrading their volunteer requirement status.

Angel: Emailed Parking and Transportation on Parking Perks. Still no response. She is going to send an email to Joan Scott to see if she can provide some assistance in reaching back out to Parking and Transportation.

Action Items:

Devin and Monica: Send bio's to Jay to be inserted on the council website.

Jay: Send Devin the Return Patient Questionnaire Form.

Devin: Post Baseline Determination Link, and the Return Patient Questionnaire Form to the Patient Only Facebook Page.

Angel: Contact Linda Green regarding the Return Patient Questionnaire Form.

Brian: Follow up with the MyHealth team about uploading the Return Patient Questionnaire Form.

Colleen: Follow up with Karrie regarding the status of IT Web Ex off site.

Brian and Angel: Contact Vertex and the clinic regarding the new project.

Angel: Contact Meg once procedure for Parking Perks has been established. See if Meg can provide verbiage for this perk to be posted on the Facebook page.

Lauren and Devin: Continue working on CF Encounters Project.

Monica and Angel: Continue working on Issue Management Protocol Project.

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

All: Council members continue to complete Volunteer Requirements. Angel will follow up with each council member with their updated status's and cc Mary Song on the email.

Future Project: CF Patient Medical Compendium. Brief summary: A form to list all diagnosis, and last time air filter change for compressor, etc.  Forecast to start new project sometime this fall.

Meeting called to a close at 6:05pm.
Next Council Meeting on June 17, 2015