Sunday, April 19, 2015

"04-15-2015 Minutes"

"04-15-2015 Minutes"

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

Members Absent: Lauren, Ed

Council Votes: March's Minutes Approved 

Project Updates:

CF Encounters: Lauren and Devin have received a handful of valuable encounter stories. Asked the council for suggestions to help brainstorm ideas as to how to collect more stories. Suggestions from the council: post project again to the Facebook Page, scan through older Facebook posts to see if an encounter was mentioned and try contacting the person directly to see if you can use their encounter experience. Next step is to start re-writing, and collaborating on verbiage. 

Issue Management Protocol: Monica and Angel collaborated with Devin and Lauren to see if any of their encounter stories they received could help shed some light on their project. Devin and Lauren recommended asking scenario questions, for example "what if you're in-patient and you really don't like your nurse" Also posting the topic to other CF Facebook groups. Lastly reaching out to other social media group such as: Tumbler, CysticLive, Twitter etc. Monica contacted Meg about centering an entire support group session around this topic. Meg loved the idea and will come up with a creative way to turn it into a topic that could not only be therapeutic for people to discuss but also helps us with our project. 

Coordinating with CFF and External Clinic Development: Update on the C3N Project. Shawn shared with the council the group has been working on the topic How To Improve
The Clinician Work Experience. For example: If a clinician is having a bad day how can they stay positive for patients.? The groups is looking into ideas to help promote a happy positive environment for clinicians which will overall help with staff and patient interaction.  

Clinic Patient Opportunities: A recurring topic on the Patient Only Facebook Page -  CF Services Pharmacy not distributing medicines to California. Since Ronnie is sliding into Jennifer's NP role we want to collaborate with the clinic to bring helpful tips to patients and give the clinic a heads up on this topic. Elika, Jennifer, and Ronnie appreciated the heads up on this topic. They are in the process of contacting the pharmacy reps to address this issue. There understanding was that only patients with Medicaid (MediCal and Medicare) were being affected but it turns out it's also affecting patients with private insurance. At this time CF Services Pharmacy is not distributing medicines to California because they are waiting on their contracts to go through. Elika mentioned Ronnie was meeting with a pharmacy rep on Thursday for clarification and trouble shooting. 

Council Website: Jay mentioned Victoria sharing with the council about adding two sections to the website: a Past Member Section, and a Memorial Section for members who are no longer with us. 

Action Item Follow Ups from Previous Meeting:
  • Monica emailed Colleen a topic for next years CF Ed Day. Topic - Adult Nutrition. 
  • Monica contacted Meg about Issue Management Protocol project being the topic of Support Group. 

Action Items:
  • Devin and Monica: Send bio's to Jay to be update on the council website. 
  • Colleen and Brian: Collaborate on a Protocol for the CF Conference Room. 
  • Angel: Email Mary Song regarding Volunteer Requirements to make sure the council is up to date. Copy Colleen on the email. 
  • Angel: Follow up with Parking and Transportation on Parking Perks. 
  • 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. 

Meeting called to a close at 6:40pm.
Next Council Meeting on May 20, 2015

Thursday, April 9, 2015

April 2015 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, April 15, 5:00pm-6:10pm
Location: Blake Wilbur  Room W1084 &
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Please have this copy of the agenda and attachments with you during the meeting.


  1. Introduction (5:00 – 5:10)
  2. Adopt March minutes (5:10)
    Please review Angel’s minutes on the blog or via her email previously sent to you
  3. CF PFAC Project Update – (5:20 – 5:50)
    1. CF Encounters – Lauren
    2. Issue Management Protocol – Angel/Monica/Elika
    3. Virtual Meeting Proposal/Online Collaboration
Coordination with CFF and external clinic development – Shawn
    1. Clinic-Patient Opportunities – Angel/Monica/Elika
    1. Council Website
Input for potential improvements
  1. Action Items from Previous Meeting (5:50 – 6:00)
    1. Monica: Email Colleen suggested topics for next years CF Ed Day.
    2. Monica: Contact Meg about sharing the Issue Management Protocol projects during a Support Group session.
    3. Angel: Follow up with Parking and Transportation on Parking Perks.
    4. 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.
    5. All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.
  2. Reminders
    1. Publicize Council and council activities
  3. Final Comments/Discussion/Reminders (6:00 – ??)

Adjournment - Next meeting May 20, 2015

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