Thursday, August 21, 2014

"08-20-2014 Minutes"

ACFAC Minutes 08-20-2014

Members Present: Jay, Victoria, Monica, Ed, Angel 

Members Absent: Devin, Mallory, Brain E, Colleen, Annette 

Guest Present: Karen

Council Votes: July's Minutes Approved

Project Updates: 

Clinic Patient Opportunities: At last months meeting Elika 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 patients to contact the Clinical Director Dr. Paul Mohabir. Angel and Monica reached out to Elika through email asking if giving out Dr. Mohabir's email address was the best approach to getting a patients issues or concerns answered? Will he answer the patients emails? We understand he is a very busy person. What is the best approach? Elika replied back understanding our concern and said she would check with Dr. Mohabir regarding his email address. As far as issues and concerns getting answered and resolved we should start directing patients to email Jennifer or Elika. Note patients can feel free to address issues or concerns with Dr. Mohabir directly if they wish. 

Monica and Angel noticed the hot topic still trending on the Facebook page is the "grey area" of why patients can't call in and request medicines over the phone. We (the council) understand it's because we are all "unique cases."  Monica and Angel came up with the idea of what if the clinic wrote up an article and published it in the next upcoming Newsletter, about the new policys and changes in the clinic regarding call in's for medicines? The article doesn't have to include all the exceptions to the rule, but more of an explanation as to why the clinic is shifting their policy. The article can go on the Website, Facebook Page, Newsletter, and maybe have flyers in clinic when patients check in. It will cover a range of CF patients and hopefully help CFers better understand where the clinic is coming. We shared this idea with Elika through email and she thinks publishing an article in the Newsletter and posting it on the Facebook Page is a great idea. This is all apart of the councils goal to improve communication, identify common goals and have a partnership with staff and council. Elika and Jennifer will start working on the article.

Contact and investigate other advisory boards to see what other councils are doing, how they function and do all hospitals have an advisory board? Angel is waiting for responses back. Once she gathers up the feedback she will write up a summary and be ready to share with the council at next months meeting. 

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. CFRI held its annual conference at the beginning of August and for those who attended or participated via webex everyone was given a evaluation / questioner form to fill out. The forms asked similar questions as to the one the council has been working on. We feel CFRI may already have the answers as to other ways to reach out. Looking at this question it's hard to come up with anything new because it seems all the bases are covered. Jay noticed the CF Retreat was not listed as a way of reaching out. Ed made the comment it would be nice to have a CF Directory of Services for CFers. This might be something CFRI may want to look into. 

Tasks Assigned:

Angel : Contact Jennifer to see if the MyHealth team has been in contact with her regarding emails.  

Jay: Contact Camille, Elika or Meg regarding updates on Patient Questioner Form? 

Brain E:  NACFC contact share at next months council meeting.

Brain E:  Patient Family Partner Board share at next months council meeting.

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

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

*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 6:00 pm

Next Meeting September 17, 2014

Thursday, August 14, 2014

August 2014 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, August 20, 5:00pm-6:00pm
Location: Blake Wilbur  Room W1084 &

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 Annette!
2.  Adopt July 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.    Clinic-Patient Opportunities – Monica/Angel/Elika
                                                    i.     Status Update
                                                  ii.     Ongoing Tracking
b.    Outreach to other advisory boards
                                                    i.     Angel/Ann report out
                                                  ii.     NACFC contact – Brian
                                                iii.     Patient Family Partner Board report out – Brian
c.     MyHealth interviews – no update
d.    Virtual Meeting Proposal – no update
4.    Action Items from Previous Meeting (5:40 – 5:50)
a.    Colleen – provide Joan a list of receipts for the volunteer orientation process.
b.    Elika – email Angel the outreach list for other councils.
c.     Joan to investigate "parking cheats" for "unique cases."
d.    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?
5.    Proposals for New Projects (5:50 – 6:00)
a.    Clinic form (MyHealth) – Volunteers?
b.    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 9/17/14

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