Thursday, December 18, 2014

"12-17-2014 Minutes"

ACFAC Minutes 12-17-2014

Members Present: Brian, Devin, Jay, Angel, Annette, Shawn, Victoria, Lauren

Members Absent: Ed, Colleen, Monica

Guest: Elika, Jennifer

Council Votes: October Minutes Approved

Project Updates: 

CF PAC Project Updates - Open Issues (Oral Antibiotics and Baseline Determination)
  • Oral Antibiotics: Elika reported to the council that the CF team reviewed the list of issues and concerns presented by the council hovering over the topic, of calling in for oral antibiotics. The census from the CF team was every patient should be treated case by case. Meaning what's best for each CF patients unique needs. Our CF population is growing and with that comes changes in side effects to medicines, resistance, cdiff infections, liver issues, kidney issues, flu season, etc..  Setting a algorithm would be difficult and complex because each patient is so uniquely different. Can a patient use their previous sputum culture to call in for oral antibiotics to hold them over until thy can be seen in clinic? It depends on your unique case. Solution case by case. 
  • Baseline Determination: There are two ways you Fev1 scores get recorded. One is a Chart Flow Sheet that banks all your Fev1 scores over a course of three years. The data is entered manually and it provides the doctors an overview of your Fev1 scores. Secondly is a Note. The Note summarizes notes within a years time and looks at the highest scores within the year. The Note does take into account your research study participation pft scores, hospitalizations, discharges etc..  

Virtual Meeting Proposal/Online Communication - Coordinate with CFF and External Clinic Development 
  •  Shawn was contacted by Kathy from Dartmouth who created a survey to better improve patient healthcare. Kathy will send Shawn the survey to share with the council members. Once the council members approve the survey, Shawn will then pass it along to Meg who can distribute it to the CF community at Stanford. Other places participating in the survey are: Cincinnati, Chicago, California and Seattle.  

MyHealth Project Update Status: No updates at this time. 

Stanford Facebook Page Meeting Volunteer: Monica to report on at next meeting. 

Actions Item Follow Ups From Previous Meetings:
  • Colleen contacted both Dr. Milla and Dr. Mohabir regarding the new infection and control policy change. Stay 6 feet away from other CF patients and wear a mask. People with resistant organisms should not attend as well as those with cepacia, non tuberculous mycobacterium. 
  • Angel followed up with Jennifer to see if the MyHealth Team had been in contact regarding her email issues. Jennifer emailed Christian (MyHealth team member) back on 11/18/14. However she still has not received a response back. Jennifer also cc'd Joan Scott on the email to Christian and still no response. Jennifer asked if anyone from the council was in contact with the MyHealth Team that could pass along her phone number to get this issue resolved. Angel forwarded an email to Brian asking if he could help Jennifer contact someone from MyHeatlh to get her email issues resolved. 
  • The Newsletter article regarding new changes and policy was published and distributed by mail and is on the Stanford CF Clinics Website. The article printed was on CFer's needing a Primary Care Physician. 
  • Return Patient Questionnaire Form was sent out to all council members on 12/16/14 to review and provide feedback to Jay. Can this questionnaire form be available on the Facebook Page? Under current antibiotics can it list last oral antibiotics, iv antibiotics to make patients more responsible for their care? Can the word "normal" be changed to "a symptomatic" Elika made the suggestion to send out an email to other NP groups who use patient questionnaire forms and see what they find useful. This way we don't have to reinvent the wheel. No timeline has been set to finalize this questionnaire form. The Return Patient Questionnaire Form would help save time during a clinic visits.
  • Parking cheats for unique cases was decided to be closed at this time. 
  • Angel received and email from Linda Velez from Stanford Volunteer Resources reminding council members to log in their volunteer hours. Angel will pass along the email to all the council today with links and instructions. 
  • Follow up with committee members on what extra steps they may have to complete to become a full Stanford Volunteer. Angel sent an email to Lorna Oyarce in November informing her she was working on gathering a list of all council members who have completed the volunteer orientation, and those who still needed too. Asking who to contact if the volunteer orientation still needed to be completed. Loran responded that recently she had been altered to the fact that when it shows some people are incomplete in their Healthstream (the online training modules) it could be showing it due for next August. Due to the Thanksgiving Holiday Angel's email might have gotten lost to Lorna. Angel emailed Linda Velez  Stanford Volunteer Recourses and is awaiting a response. 
  • MyHealth Follow Up Interviews: No updates. 

Action Items for Next Meeting: 
  • Elika: Write up an insert to be published in the next Newsletter regarding the topic of Baseline Determination.
  • A council member: Post the Baseline Determination topic on the Facebook Page. 
  • All council members: Review the Return Patient Questionnaire form and send your suggestion to Jay.
  • Jay: Email Elika the Return Patient Questionnaire form for suggestions.
  • Elika: Email other NP groups who use a Patient Questionnaire from to see what they find useful. 
  • All council members: "Talk up the council" to other CFers in the waiting room at clinic. (Remember wear a mask and stay 6 feet away)
  • Jennifer: Discuss with the New Clinic Manager to see if the ACFAC brochures can be placed at the front desk.
  • All council members: Review the councils website and look for ways to improve it. Send your suggestions to Annette. 
  • Brian: If you are able to get into contact with the MyHealth Team pass along the email issues Jennifer is having. Also check to see if there is a way Jennifer can use MyHealth to send patients forms like a patients assistance program. 
  • Lauren: Join the Facebook Page, and advertise the council on Facebook Page . 

Meeting called to a close at  6:30pm
Next Council Meeting: January 21,2015

Wednesday, December 10, 2014

December 2014 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, December 17, 5:00pm-6:15pm
Location: Blake Wilbur  Room W1084 &
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Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines, which at this time allow only one individual with CF in the meeting room.  This week that person will be Angel.  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)
    1. Welcome Lauren Carton!
  2. Adopt October minutes (5:10)
    1. Please review Angel’s minutes on the blog or via her email previously sent to you
  3. CF PAC Project Update – (5:10 – 5:25)
    1. Clinic-Patient Opportunities – Monica/Angel/Elika
                                                    i.     Open Issues (Oral Antibiotics, Baseline determination)
                                                   ii.     List Definition – Status
    1. Virtual Meeting Proposal/Online Collaboration
                                                    i.     Coordination with CFF and external clinic development – Shawn
                                                   ii.     MyHealth project status – updates per participants
                                                 iii.     Stanford Facebook meeting volunteers – Monica
  1. Action Items from Previous Meeting (5:25 – 5:50)
    1. Contact both Dr. Milla and Dr. Mohabir regarding the new infection control policy change – Colleen
    2. Check on the status with Jennifer to see if the MyHealth team has been in contact with her regarding emails – Angel 
    3. Check on the status of the Newsletter article regarding new changes and policy from the clinic – Angel
    4. Send committee an updated version of the Patient Questionnaire form after updating it with suggestions from Elika - Jay
    5. Follow up with Joan to investigate "parking cheats" for "unique cases" – Brian
    6. Remind member about Stanford volunteer time input request – Brian/Angel
    7. Follow up with committee members what extra steps they may have to complete to become full Stanford Volunteers. Also find out what acronyms like "CRIM" (sp?) mean - Brian/Angel
    8. After trip to Israel, follow up with MyHealth group concerning - Brian
    9. Follow up with Elika regarding the policy regarding calling the clinic for antibiotics and, when appropriate, baseline determination – Angel and Monica
    10. Draft an accomplishments and history section for the website – Jay
    11. Review CF Advisory website to see how the website may be improved - All Send suggestions to Jay.
    12. Follow up with CF center at Dartmouth and CFF about external clinic development, keep Brian (and council) informed of progress – Shawn
    13. Monitor Stanford patient FB group and note issues that people bring up that the council may be able to address – Devin
  2. Reminders – Improving our Visibility and Increasing Membership Status
    1. Posting the agenda to the CF Patient Facebook Page - Ongoing
    2. Posting on our own personal Facebook Pages to see if we can spark the interest – all
    3. Look at the Council website and think of ways to revamp it – Jay, all
  3. Proposals for New Projects (5:50 – 6:00)
    1. Pending Future Project: Joan and Brian E to contact Christine from MyHealth to see about a possible collaboration between Epic Synopsis and MyHealth

Adjournment - Next meeting Jan. 21, 2015

Administrator invites you to this meeting on behalf of Tom Metz

CF Adult Advisory Council Meeting from 5-7p
Wed, Dec 17, 5:00 PM | 2 hr
(UTC-08:00) Pacific Time (US & Canada)

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