Thursday, January 28, 2016

"01-26-2016 Meeting Minutes"

ACFAC Meeting 01/26/2016

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

Members Absent: Colleen, Erick, Monica, Lauren 

Guest: Julian, Jennifer, Joan 

November Minutes Adopted 

A Virtual Clinic Proposal / Online Collaboration: Follow up next meeting. 

CF Encounters: Devin is ready to ship out the document. He first wanted feedback from the council on what departments should receive the document. For example: Clinics, and Units (B1 and C3). Jennifer offered for her and Elika to collaborate the best ways to distribute the document, to units and clinics. After the document is sent out what is the next step? One suggestion is to gather data from a medical perspective a clinical eye to connect better. Joan suggested working with the clinic staff to see how they use the document and get out of it as much as possible. Jennifer and Julian suggested a first step to introduce the document is during one of their monthly CF Clinic meetings. CF Clinic meetings are held the second Friday of the each month. Next CF Clinic meeting is Friday, February 12 at 11:30am. Joan is happy to help educate the clinic staff on the project and provide insight to PFAC and its goals. Jennifer and Julian will coordinate with Joan. Joan asked the council with our permission she would like to use the CF Encounters project with other PFACs throughout the hospital. The council is happy to share the project. A second suggestion regarding advertising the project, Jennifer shared last year Elika hosted a Cystic Fibrosis Compendium for the Chest Clinic, Nursing Staff, and Respiratory Therapist etc.; to learn more about CF care. The next Cystic Fibrosis Compendium is Tuesday, March 8th.Jennifer mentioned maybe adding a space for a patient speaker to discuss the project. Also CF Education Day is a great way to spread the word and give people a better perspective. Lastly adding an insert and providing a link to the lasted version of the project in the CF Newsletter.

Informational Sheet on Masks: Follow up next meeting.

Issue Management Decision Tree - Angel spoke with Meg regarding disturbing the Outpatient Decision Tree Brochure in clinic. Meg mentioned the council can have the brochures in clinic and be made available to patients. Meg also suggested having a stack on her desk because more than likely she will be the first to hear about an issue and can provide this tool to patients. Inpatient brochure is in the works.

Coordinate with CFF and external clinic development - Shawn shared the groups are done and have submitted everything to CFRI. It should take the foundation 4 weeks to get together and approve everything. They should know by end of February. Shawn has offered to be in other committees. He is to start working with another committee Promenade Retail Space Stanford. 

Return Patient Questionnaire - Jay will send the RPQ form to MyHealth. He also suggested having an icon “upcoming appointment” with a drop down menu to the questionnaire on MyHealth for patients to fill out before a clinic visit. Julian asked how would the clinic staff would see the forms before a patients visit? She suggested when Jay has his next meeting with the MyHealth team coordinating so a CF team member could sit in on the meeting.

Clinic Patient Opportunities – Angel sent out an email to Elika, Jennifer, Ronnie and Julian regarding the Facebook post to help determine which medicines aren’t available during a hospitalization and what the process should be for patients when using their own medications from home. The staff received and reviewed the email and will put together an answer / list for Meg to post on the Patient Only Facebook Page.

A frequent topic on the Patient Only Facebook Page is patient’s prescription refills problems, and return phone calls. Julian shared at the beginning of the year insurance companies and pharmacies can change coverage for certain medications. Insurance requirements change all the time and can make things tricky. Most CF medication is very expensive and requires prior authorizations. Sometimes the insurance companies need to see prof that the medicine is working. Meaning has the patient been evaluated during a recent clinic visit. Even if the patient has been on this medicine for years the insurance companies may need a chart note to provide explanation before the insurance companies will consider approving the refill. Are there any tips to help out patients? Julian suggested for patients to email through MyHealth or call the Nurse Coordinator about a week before the patient is out of the medicine. This will allow the team some leeway time to gather information for the insurance companies and submit the refill to the pharmacy. Also for patients to maintain good records of pharmacy and online pharmacy contact information. Is there a way we can help the patients and staff set a up a reminder? Maybe having MyHealth incorporate a calendar alarm for patients to request refills to staff two weeks before their medicine is out. Jay will follow up with the MyHealth Team.

Action Items:
Devin: Follow up with Zoe regarding adding an insert about the CF Encounters project in the next CF Newsletter.
Jennifer & Julian and Joan: Follow up and let us know how the CF Encounter projects went overall with the CF clinic staff.
Angel: Follow up with Colleen regarding the budget to get the Outpatient Decision Tree brochures forms printed.
Angel: Email Outpatient Decision Tree brochure PDF file to Meg, and Joan.
Angel: Post Outpatient Decision Tree Brochure on Patient Only Facebook Page.
Jay: Follow up with Christian regarding how the clinic staff would receive the RPQ form.
Jay: Coordinate with Julian regarding next meeting with the MyHealth Team.
Jay: Follow up with MyHealth regarding an calendar alarm for patients refill medication request
Jay: Contact Mary Song regarding resources for council member name badges.

Next Meeting February 23, 2016 

Meeting called to a close at 6:45pm. 

Monday, January 18, 2016

January Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, January 26, 5:00pm-6:20pm 
Location: Blake Wilbur  Room W1084 & Join WebEx
WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx dialog below or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines.  Please do not attend in person if you have an active viral infection or any other contagious condition.

Please have this copy of the agenda and attachments with you during the meeting.


1.    Introduction (5:00 – 5:10)
2.    Adopt November minutes (5:10)
Please review Angel’s minutes on the blog or via her email previously sent to you
3.    Project Update (5:10 – 5:50)
a.    Virtual Clinic Proposal/Online Collaboration – Erick/Brian
Action Items :
Colleen to provide Erick with the name of our contract in IT; Erick to contact IT for a status updates
b.    CF Encounters – Lauren/Devin
Action Items :
Joan to provide input on how to disseminate information to the units (Ex: RT, in-patient unit, infusion, etc.)
c.    Informational Sheet on Masks Devin
Action Items :
Devin to check with the clinic on their recommendations for which mask(s) should be used
d.    Issue Management Decision Tree – Angel/Monica/Jay/Elika
Action Items :
Angel to contact Meg to confirm that she will distribute this form; Colleen to contact Joan with regards to budget to print our new project documents on nice heavy weight paper
e.    Coordination with CFF and external clinic development – Shawn
f.     RPQ/MyHealth update – Jay
Action Items :
Jay to contact My Health folks to see if they can get our RPQ form in a PDF format uploaded into the MyHealth site.
g.    Clinic-Patient Opportunities – Angel/Monica/Elika
Action Items :
Angel to check with the clinic to determine which meds aren’t available during a hospitalization and what the process should be for patients when using their own medication from home.
4.    Action Items (5:50 – 6:00)
a.    Joan – update on file storage recommendation
b.    Angel – Status Report on parking perks pilot results
c.    Jay – Evaluate and report on new options for pins or badges for members to wear during Stanford visits for council promotion.
5.    Reminders
a.    Publicize council and council activities
b.    Continue to complete volunteer requirements
c.    Future Projects
CF Patient Medical Compendium
6.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting February 23, 2016
7.    Closed Session (6:10 – 6:30)

Administrator invites you to this meeting.

CF Adult Advisory Council Meeting Fourth Tuesday at 5:00pm
Occurs the fourth Tuesday of every month effective Jan 26, 2016 until Feb 1, 2017.
4:45 PM | 2 hr 15 min
(UTC-08:00) Pacific Time (US & Canada)

This invitation is for the CF Adult Advisory Council Meeting taking place the fourth Tuesday of each month starting at 5 pm Pacific

Meeting Begins at 5:00 pm
WebEx and TelePresence Connections Open at 4:45 pm

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