Sunday, March 22, 2015

"03-18-2015 Minutes"

"03-18-2015 Minutes"

Members Present: Brian, Devin, Angel, Shawn, Monica,Victoria, Lauren, Colleen, Ed

Members Absent: Jay

Guests: Karen, Elika 

Council Votes: February's Minutes Approved 

CF Education Day Recap: CF Ed Day was a success! Great job to everyone who helped put this event together. There are extra books from CF Ed Day to give out to the clinics. If anyone is interested contact Colleen. Feedback on the Blue Jean system, it was different and couldn't see any of the speakers. Angel noticed besides Meg Dvorak, there where no other presentations from any of the Adult CF clinic staff.  Colleen mentioned if we want to hear a specific topic to let her know and she will reach out to the staff members. 
Save the date for next years CF Education Day on Saturday, March 5, 2016. 

Project Updates:

CF Encounters: Lauren and Devin posted their project on the Facebook page and other internet circles, and received 4 valuable stories. They plan to have a total of 10 + stories before re-writing starts. 

Issue Management Protocol: Monica and Angel posted their project on the Facebook page and have not received any responses. Ideas to help receive patient feedback bring up the project to Meg, and find out if towards the end of a support groups session we can share this project with the group. Also working with Lauren and Devin on collaborating between the two projects. 

Coordinating with CFF and external clinic development: Update on the C3N Project. Shawn shared via email with the council the group is looking into accreditation of the clinics and is seeing out ways to help them raise their accreditation levels. 

Clinic Patient Opportunities: Status 

  • Baseline Determination: Once the article has been approved Elika will share the article with the council and we can post it to the Facebook page. 
  • NP Questionnaire Update: Elika shared from a providers perspective the Return Patient Questionnaire form is working out great. It helps patients focus on what they want to get out of their clinic visit. 
  • General Questions: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council. 

Council Website:  Pending 

Action Item Follow Ups from Previous Meeting:

Brian: Post PFCC Presentation to the Facebook Page. Pending.

Jay: Updated changes suggested by the clinic to the Return Patient Questionnaire Form and submitted the form back to the clinic. Changes and suggestions included changing the verbiage in the first question to read "List any recent changes to your medical routine." Another suggestions was under "Current Steroids Treatment" list Prednisone as the steroid and list all the inhaled steroids such as Advair, Flovent, Qvar and Pulmicort. 
Angel: Had a telephone meeting with the Director of Transportation Services and Transportation Strategy regarding what kind of parking perks could be made available to those CF patients that fall under the special/unique cases. 

Plan of Action: 

  • Defined requirement for a CF patient to need these accommodations, and the number of patients. 
  • Reach back out to Parking & Transportation find out what parking perks can be made available and what the procedure will be. 
  • Notify CF clinic of the procedure and contact person.
  • Post on CF Facebook page contact Meg for verbiage.

Overall Parking & Transportation is happy to help in anyway and appreciated the council reaching out to them. A possible procedure to avoid other Stanford patients or visitors all wanting parking perks, is to have the CF clinic pass out parking passes to those patients that fall under the requirements. It would be on a patient need to know basis. Elika suggested for this procedure to have a pilot run of a handful of patients for a 3 months time span. Angel will follow up with Parking and Transportation.

On March 25th Ed Kinney will be celebrating 33 years of Volunteering at Stanford.  
Congratulations and Thank You for all the work you have done, and continue to do for the CF Community!

Action Items:

  • Monica: Email Colleen a suggested topic for next years CF Ed Day.
  • Monica: Contact Meg about sharing the Issue Management Protocol projects during a Support Group session. 
  • 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 6:05pm.
Next Council Meeting on April 15, 2015

Wednesday, March 18, 2015

March 2015 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, March 18, 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 February minutes (5:10)
    Please review Angel’s minutes on the blog or via her email previously sent to you
  3. CF Education Day Recap – Angel (5:10 – 5:20)
  4. 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 – Monica/Angel/Elika
Status (Baseline Determination, NP Questionnaire Update, General Questions)
    1. Council Website
Input for potential improvements
  1. Action Items from Previous Meeting (5:50 – 6:10)
    1. Brian: Post PFCC Presentation to the Facebook Page.
    2. Joan, Elika, Jennifer, & Angel: Joan provide Angel the contact information for the Parking Transportation. Angel pass along the contact information to Jennifer and Elika so they can provide a list of cf patients to the Park Transportation that meet the special situations / unique cases.
    3. Lauren, Annette and Devin: Start working on the CF Encounter Project.
    4. Monica, and Angel: Start working on Issues Management Protocol.
    5. Jay: Make any changes suggested by clinic to the Return Patient Questionnaire Form.
  2. Reminders
    1. Publicize Council and council activities
  3. Final Comments/Discussion/Reminders (6:10 – ??)

Adjournment - Next meeting April 15, 2015

Administrator invites you to this meeting.

CF Adult Advisory Council Meeting” from 5-7p 3/18/15
Wed, Mar 18, 5:00 PM | 2 hr
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