Sunday, July 20, 2014

" 07-16-2014 Minutes"

ACFAC Minutes 07-16-2014

Members Present: Jay, Victoria, Mallory, Colleen, Ed, Angel, Brian E, Ed, 

Members Absent: Devin, Monica

Guest Present: Karen, Joan, Elika, Jennifer, Lorna 

Council Votes: June's Minutes Approved

Project Updates: 

Joans Action Items Updates

  • Joan will continue to update the council on staff involvement. 

  • Joan provided the council with an update regarding cross-domain. The cross-domain advisory has grown establishing a key concept between families, patients and MyHealth.  The Patient Family Partner Program Board (PFPPB) kicks off on July 31st. All of the councils will gather to discuss best practices, formalization of bylaws, applications, and communication sharing. There is a need for a virtual way to work on projects and not have it solely relay on email tags. An idea to get rid of the email tag is to adopt the concept of box cloud base system. If a council is having a topic in need of help they could enter there problem in the cloud based system to get more feedback from other councils. As of right now the only access to the cloud based system would be employees. In the future volunteers could have access to this tool. This idea is about 6 months out from presentation to all groups in collaboration with clinics. 

  • Follow-up on alignment between volunteer guidelines and current ACFAC membership. On August 19th in the Bing Dinning Room there will be an orientation process for patients, and family members to get "grandfathered" in as a volunteers. 

  • Clinic Patient Opportunities: The key goal is to improve communication, identify conman goals and have a partnership with staff and council. 

Elika shared the Cystic Fibrosis Newsletter is an outreach tool the staff uses to update the patients on any changes going on in the clinic. Colleen reported the Cystic Fibrosis Newsletter is mailed out to every CFer who is registered through the clinics. The newsletter is also available in both the Adult and Pediatric clinics, and the pdf version is available on the Stanford website about a week or two after if has been published. Elika mentioned the staff having more of a physical attendance to the advisory council meetings. Possibly having a staff member attend the meetings on a every other month basis. This will help the council and staff support each other and have a partnership to solve and conquer projects. Elika also stated if we as council members are noticing there is ongoing issues, problems, or concerns about the clinic arising on the Facebook page, to direct the people to contact the Clinical Director Dr. Paul Mohabir. This will help the team become aware of any issues, problems, or concerns, so they can find a way to resolve it. If someone is not comfortable enough working directly with the team encourage them to send an email to Angel or Monica and we can relay the information to Elika. Again the goal is to improve communication, identify conman goals and have a partnership with staff and council. 
An ongoing project Elika has been following up on the Epic Synopsis. Epic Synopsis is like a follow up sheet, it pulls data from results on everything we as patients have done. She is still waiting on reviews. This could open the door for a possible collaboration between Epic and MyHealth working together. 

Embroy Feedback: Ashley called in from Georgia during last months meeting. She is currently involved in trying to start a CF advisory council for Emory hospital.  She was very impressed with our council, stating she liked how the council took responsibility for the tasks assigned to them, and how we conquered tasks. We will see if we can get a follow up with Ashley in the next month or two. 

MyHealth Second Interview Feedback: Brain E asked the question"when do we know were done solving a problem?"  He provided a presentation titled " Prepare for CF Clinic" you can view the presentation on the Facebook Page. The CF Visit Storyboard concept is before your next clinic visit to go through the storyboard and click on the needs, goals, issues, and problem for your "unique case" to help improve your upcoming clinic visit. This will help make sure questions get answered, and action items get resolved before the end of your clinic visit. This concept goes along with the idea of the virtual clinic visit.

Jennifer asked the council if there a way the MyHealth team could help filter email messages that get emailed to her? As of right now when you send a email to Jennifer it goes into a pulmonary que and she has to filter through hundreds of emails to find the ones specifically for the CF clinic. Joan and Brain suggested contacting Christine  (a member of the MyHealth team) to see if he could meet with clinic staff to get this issue resolved and possibly gather feedback for their expectations for MyHealth. 

Colleen reported to the council that yes the council can put a question and answer section into the newsletter. 

Tasks Assigned:

Colleen send Joan a list of receipts for the volunteer orientation process. 

Elika email Angel the outreach list for other councils. 

Elika, Monica, and Angel work together to provide a set list of potential opportunities for improving clinic experience.  

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? 

Joan to investigate "parking cheats" for "unique cases."

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? 

*Pending Future Project: Joan and Brain E to contact Christine from MyHealth to see about a possible collaboration between Epic Synopsis and MyHealth.*

Meeting called to a close at 6:55 pm

Next Meeting August 20, 2014

Thursday, July 10, 2014

July 2014 Agenda

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

Date/Time: Wednesday, July 16, 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.   Welcome Mallory!
2.  Adopt June minutes
a.    Please review Angel’s minutes on the blog or via her email previously sent to you
3.    CF PAC Project Update – (5:15 – 5:40)
a.    Joan – Action Item Update
b.    Clinic-Patient Opportunities – Monica/Elika
                                                    i.     Status Update
                                                  ii.     Ongoing Tracking
c.     Outreach to other advisory boards
                                                    i.     Angel/Ann report out
                                                  ii.     Emory feedback
                                                iii.     Cincinnati
d.    MyHealth interviews – Jay, Monica, Victoria, Richard, Brian
                                                    i.     Summary, overall impressions
                                                  ii.     Storyboard – Follow-up interviews, questionnaires
e.    Virtual Meeting Proposal
                                                    i.     Alignment w/ Cincinnati Effort/CFF
4.    Action Items from Previous Meeting (5:40 – 5:55)
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.    Devin: Write a post on the Facebook pages asking for "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.
c.     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?
d.    Covered in agenda
                                                    i.     Participants capture MyHealth interview impressions
                                                  ii.     Brian E: meeting with Joan
                                                iii.     Ann / Angel: Contact and investigate other advisory boards to investigate opportunities for collaboration
5.    Proposals for New Projects (5:55 – 6:10)
a.    Clinic form (MyHealth) – Volunteers?

Adjournment - Next meeting 8/20/14

Administrator Administrator invites you to this meeting.

CF PAC Meeting July 16th 5-7p
Wed, Jul 16, 5:00 PM | 2 hr
(UTC-08:00) Pacific Time (US & Canada)

This invite is for the CF PAC Meeting
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