Monday, February 23, 2015

"02-18-2015 Minutes

"02-18-2015" Minutes 

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

Members Absent: Colleen, Ed, Annette 

Guests: Joan Scott, Karen, Mary Hong, Elika

PFCC Status Update: Joan provided the council an update on the Patient and Family Program. Recently hired Mary Hong has joined the team as the Program Manager. Mary will be in contact with committee members over the next few weeks, following up on what extra steps may be needed to become a full Stanford Volunteer. Joan gave the council a summary and update on the Patient Family Partner Program. The PFPP is a journey of revolutionary care, focusing on staff systems, patient friendly, patient focused, patient centered and patient and family centered. The value proposition: improved patient family satisfaction, improved quality, safety, and clinical care, and improved staff and physician engagement. What roles do patient and family partners play? They are Advisors, Advocates and Partners. The partnership model is patients, family and hospital all working together to serve the same purpose. Since 2009 up to 10 councils have been formed, and withing the next few months a total of 17 councils will be active. Staff members are beginning to see the value of having these councils. 

Parking Perks for "Unique Cases" Update: Parking and Transportation will work with the cf clinic to provide valet parking for cf patients who have special situations /unique cases.  The clinic can provide a list of cf patients to the parking and transportation to make sure patients needs are accommodated.  Joan will provide Angel the contact information to be passed along to Elika and Jennifer. 

New Project Proposal: 

  • CF Encounters: To capture issues that patients have had with clinic personnel, primarily with comments that are made that the patient thinks is inappropriate. The purpose of the content that is produced is not to be presented as issues that the clinic needs to address or answer to. It is simply a collection of stories to help them understand what the patient is hearing when these things are said. In fact the source of the stories can be from other clinics. The goal is for educational purposes and targeted for the clinic, no emotion as the stories are re-written to ensure no hurt feelings. Joan suggested that maybe the re- written stories be video tapped for educational purposes. Lauren has volunteered to lead this project while working with Annette and Devin. 

  • Issue Management Protocol: Gather and collect data, publicizing what options are available to the patient depending upon the type of issues they have, and what their escalation path should be. Meaning talk issues out with the Social Worker, or a Team Member, or the Charge Nurse (only applies if you are in the hospital), when to notify Patient Relations. The goal is targeted for the patient, showing the types of issues they may experience and what their options are with regards to coming to some type of resolutions. Elika suggested to gather patient feedback for starters how about posting a general question on the Facebook page. For example " If you had a problem in clinic or in the hospital what channels would you take?" Angel and Monica have volunteered to work on this project. They will also work with the clinic staff  (Meg, Jennifer, and Elika) to help define and coordinate what channels are available. 

Coordination with CFF and external clinic development: Shawn provided an update on the CN3 project he is participating in, on behalf of the council. The group is trying to work on finding ways to help patients that live long distance to have their clinic visits via Skype, Web-Ex, or another method. The goal is to cut down expenses for everyone. A gentleman in the group is working on an algorithm creating guidelines to predict how and when hospitalization or clinic visits are needed. 

MyHealth Update Project Status: Brian just received an email from Christian. He will follow up with the MyHealth team and report back to the council.
Jay shared via email and update he received from the MyHealth Team: "At the end of January, a SHC styled version of the MyChart iPhone app became available on Apple's app store. As for the website application, which was discussed on several occasions with interviewees, they are nearing the end of the development and plan to release a new version later this year. From the patients perspective, these new releases of the iPhone app and the website application essentially offer styling improvements. The most significant achievement so far are technical improvements to the user experience. The forthcoming release introduces a number of significant enhancements including: 
  • a new home page that features an overview of the patient's care team as well as recommended content that is meant to be personalized
  • filtered scheduling that only offers those options the patient can actually schedule online
  • a streamline installation workflow for mobile which can cut down from 12 steps to 3 and makes the Stanford version of the app a distinct item in the app store. 
MyHealth will continue to gather feedback from interviewees on more substantial improvements they are exploring for future releases." 
If you have an iPhone, you can download the app via the direct link to the app store
Egea, Christain. "MyHealth: Patient Engagement" Email to Jay Archilbald. 18, Feb 2015

Clinic Patient Opportunities Status: Elika did submit the Baseline Determination article for the next upcoming newsletter. Once the article has been approved she will provide the article to the council, so it can be posted on the Facebook page. 

Patient Questionnaire Status: The Return Patient Questionnaire Form was put into use on February 18th. All cf patients who had clinic on February 18th, had an opportunity to use the form during their clinic visit and offer feedback to the team. Changes and feedback recommend by Elika, under Medical Routine and Medications it states "List any recent changes in your medications or medical routine (including integrative or alternative therapies)" instead it could ask " List any recent changes in your medical routine" Since the clinic prints out a current medicine list and goes over the list with the patient, this will help the patients only think about recent changes in their medical routine. Another suggestion was where it states "Current Steroid Treatment" a recommendation is to list Prednisone as the steroid and list all the inhaled steroids. For example inhaled steroids: Advair, Flovent, Qvar, & Pulmicort. Some patients may not know that their inhaled medicines are in fact steroids. Overall the feedback from the Team and Patients is positive.  It's a great form for the new staff members joining the team, and patients to all be on the same page on what is to be expected during a clinic visit. 

Action Item  Follow Ups from Previous Meeting:
  • Brian Just received a email from Christian (MyHealth Team). He will follow up with Christian to find out any new updates or phases coming up. 
  • Brian: Spoke with the Facebook owner in regards to getting Colleen an anonymous profile set up, so she can provide medical information on the Facebook page. Elika mentioned any medical questions should be directed to the clinic. 
  • Angel: Notified Colleen 24 Hours in advanced of the number of cfers in the room. 
  • Colleen: Emailed Brian Dr. Milla's Vest Cycling Procedures. Brian posted it on the Facebook Page. 
  • Devin: Followed up with Elika regarding the Baseline Determination newsletter insert. Once the insert has been approved to go into the next issue of the newsletter, Elika will provide the council with the article to be posted on the Facebook page. 

Action Items:
  • Brian: Post PFCC Presentation to the Facebook Page.
  • 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.
  • Lauren, Annette and Devin: Start working on the CF Encounter Project.
  • Monica, and Angel: Start working on Issues Management Protocol. 
  • Jay: Make any changes suggested by clinic to the Return Patient Questionnaire Form.

Meeting called to a close at 6:22pm
Next Council Meeting March 18, 2015

Monday, February 16, 2015

February 2015 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, February 18, 5:00pm-6:20pm
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 January minutes (5:10)Please review Angel’s minutes on the blog or via her email previously sent to you
  3. PFCC status update (5:10 – 5:40) Joan Scott
  4. CF PFAC Project Update – (5:40 – 6:10)
    1. New Project Proposals
      1. “CF Encounters”
      2.  Issue Management Protocol
    1. Virtual Meeting Proposal/Online CollaborationCoordination 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. Patient Questionnaire
  1. Action Items from Previous Meeting (6:10 – 6:20)
    1. 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 patient’s assistance program.
    2. Brian: Work with Colleen on creating a profile for the Facebook page.
    3. Angel: Inform Colleen of how many CF patients will be in the room during the CF Education Day conference so she can supply masks and hand gel.
    4. Colleen: Email Brian or Angel  Dr. Milla's Vest Cycling Procedure - Complete
    5. Devin: Follow up with Elika about insert in March's Newsletter regarding Baseline Determination, and post on the Facebook Page.
  2. Reminders
    1. Publicize Council and council activities
    2. CF Education Day on March 7
  3. Final Comments/Discussion/Reminders (6:20 – ??)

Adjournment - Next meeting March 18, 2015

Administrator invites you to this meeting on behalf of Tom Metz

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