Thursday, June 19, 2014

"06-18-2014 Minutes"

ACFAC Minutes 06-18-2014

Members Present: Jay, Victoria, Monica, Brian E, Richard, Devin, Angel, Ann,
Members Absent: Colleen, Mallory, Ed, Brian T, 

Guest Present: Karen, Ashley - called in from Georgia; she is currently involved in trying to start a CF advisory council for Emory hospital.  She wanted to see the kind of things we do so she listened in on our meeting.

Council Votes: April's Minutes Approved

Project Updates:

MyHealth Interview
Jay- Had his round two interviews with the MyHealth team. He offered the team suggestions on creating a new interface, having FVC, FEV1, and Genotype options to view. Possibly adding a feature for external sources to be included. For example syncing the Fitbit with MyHealth. Making MyHeatlh more modern and user friendly. Adding the Return Patient Questioner form to MyHealth so the CF Team would be able to view information before your clinic visit. 

Monica- Suggested a timeline or a tracker feature to compare changes in your health. For example tracking your weight vs. FEV1. Also adding a Advanced Directive feature. This would allow the person on the Advanced Directive to be able to access all or limited information (depending on the limitations you set up through your MyHealth account) if you became unable to speak for yourself.
Brian E- Is scheduled to have his second interview next week. 

Victoria- Suggested creating customized or "favorites" browsers.  This feature would allow you to customize what you want to view on your MyHealth account. For example tests, procedures, weight, ect.  Improve charting abilities, and being able to compare FEV1 to weight. Attach links on certain tests or conditions. The Palo Alto Medical Foundation's MyHealth grants access to a persons you appoint to view your information after signing a HIPPA form. This could be also the person on your Advanced Directive such as a spouse, friend, or family member.
Richard- Had the same input and experience as everyone else. Nothing more to add. 

* Overall the MyHealth interviews went great and those that participated really felt that their inputs and suggestions where being valued and heard* 

Clinic - Patient Issues: Monica reported the hot topics on the Facebook page. CFer's are still confused on why they need a primary care physician, and the issue of calling the clinic to get a medicine prescribed to you over the phone as opposed to coming into clinic. We suggested to Monica to reach out to Elika and see if we can get a commitment from Elika to join the council meeting every 1st quarter to summarize issues and continue the open communication between staff and patients.  Karen made contact during the meeting to Elika and reported back to the council that Elika and Jennifer will be attending the next council meeting. Thank you Karen. 

 Virtual Meeting Proposal: Brian E reviewed questions, concerns and feedback regarding virtual clinic visits. Stating we as a council agree this concept is not to replace physical clinic visits. You still would have to commit to coming in to the clinic a couple of times of year. This concept could eliminate the phone tag issues. Also be easy for a discharge patient for their follow up visit. The wording in the proposal needs to be changed to state that this would make a patient more compliant. Brian submitted a brief description about MyHealth and the  concept of the Virtual Clinic Visit to the CFF webpages idea box. Asking if there was any other clinics or hospitals currently using this concept. He received an email back stating that this concept was  already in the works. He had a conversation with  a staff member from CFF and they mentioned two major projects in the works over the next five years.                 (Focus on Adherence, and Improving the Voice of CF Adults). Within three months CFF will contact the council regarding the virtual clinic proposal.            
Proposal for New Projects: Updating the Return Patient Questioner form. Making the form more useful and modernized by linking it to MyHealth. 

Tasks Assigned:  

MyHealth interview: Any council members still scheduled to have their round 2 interviews  provide a quick summary with any feedback from your interview that you would like to share with the council at next months meeting. Also offer a suggestion to the MyHealth team that creating a reminder alert for patients regarding the Return Patient Questioner is available for use.

Devin: Write a post on the Facebook pages asking CFers "parking cheats" that anyone knows about. Collect the data, and contact Guest Services, and the CF Clinic to see if these "parking cheats" are legit. Then create a PDF for next months meeting. 

Ann / Angel: Contact and investigate other advisory boards to see what other councils are doing, how they function and do all hospitals have an advisory board? 

Colleen: contact the editor of the newsletter regarding a questions and answer section. The council comes up with a general question and staff can answer and have it published in the newsletter. 

Brian E meeting with Joan today June 19th to gather feedback on the previous tasks assigned to Joan . 

All Members:  Open suggestions "in what ways can CFRI improve and increase resources / outreach programs in the community." Currently CFRI provides The Discovery Series, Community Newsletter, Educational DVD's and the Annual Educations Conference. Think of other ways to reach out? 

Meeting called to a close at 6:30pm                                                                                                                             
Next meeting will be on July 16th.

Wednesday, June 11, 2014

June 2014 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council
(CF PAC) June Agenda

Date/Time: Wednesday, June 18, 5:00pm-6:00pm
Location: Hoover Pavilion 5th Floor Conference Room& WebEx

Please Note Change in Conference Room
Directions to Hoover Pavilion
From Bayshore US Highway 101 North or South
1.     Take the Embarcadero Road/West exit.
2.     Follow Embarcadero Road for about two miles.
3.     Turn right on El Camino Real and left on Quarry Road.
4.     The Hoover Pavilion is located at 211 Quarry Road and will be on your left.

From Highway 280 North or South
1.     Take the Sand Hill Road exit and head east.
2.     Turn right on Arboretum Road and left on Quarry Road.
3.     The Hoover Pavilion is located at 211 Quarry Road and will be on your right.

El Camino Real North or South
1.     Turn on Quarry Road.
2.     The Hoover Pavilion is located at 211 Quarry Road and will be on your left

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, which at this time allow only one individual with CF in the meeting room. 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)
a.   Hello Ashley
2.  Adopt April minutes
a.    Please review Angel’s minutes on the blog or via her email previously sent to you
3.    ACFAC Project Update – (5:15 – 5:40)
a.    MyHealth interviews – Jay, Monica, Victoria, Richard, Brian
                                                    i.     Round 1 vs. Round 2, overall impressions
b.    Clinic-Patient Issues – Monica
                                                    i.     Potential for regular (quarterly, bi-yearly) “partner” update
c.     Virtual Meeting Proposal
                                                    i.     Thanks for the input!
                                                  ii.     Update on subsequent activity – CFF
                                                iii.     Additional comments
4.    Action Items from Previous Meeting (5:40 – 5:45)
a.    Colleen – contact the editor of the newsletter regarding a questions and answer section. The council comes up with a general question and staff can answer and have it published in the newsletter.
b.    Brian – write up a short summary of ACFAC activity for newsletter
c.     Joan – conversation with clinic staff and getting their involvement
d.    Joan – provide  update (when appropriate) for cross-domain advisory council, Elyse expressed interest in participating
e.    Joan – follow-up on alignment between volunteer guidelines and current ACFAC membership.  Includes a follow-up for Jay’s issue on information he submitted earlier.
f.      Joan – meet with Ann and Meg concerning the strategy for Ann’s desire to help with fund-raising for the CF community.
5.    Proposals for New Projects (5:45 – 6:00)
a.    Outreach to other advisory boards (adult, any?)
b.    Clinic form (MyHealth?)

Adjournment - Next meeting 7/16/14

Administrator invites you to this meeting.

CF PAC Meeting 6/18/14 5:00-6:00PM
Wed, Jun 18, 5:00 PM | 1 hr
(UTC-08:00) Pacific Time (US & Canada)

This invite is for the CF PAC Meeting

Telepresence attendees press the green "Join" button on the tabletop touch screen. (note: if you need to switch TP rooms for this meeting contact UC team)
• WebEx attendees would be best to have a hardwired network cable on their machine then click the green "Join Using WebEx' tab within this invite.
• Next join the WebEx audio bridge by phone. Do not use computer audio.
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Questions call:
Tom Metz
Unified Communications
650 492 3675
Meeting password: 2014
Meeting number: 344598678

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