"09-17-2014 Minutes"‏

ACFAC Minutes 09-17-2014

Members Present: Brian, Devin, Colleen, Angel, Jay, Monica, Ed, Annette, Shawn  

Members Absent: Victoria 

Council Votes: Council Voted on the new council position: Devin (Vice-Chair) August's Minutes Approved.                                                       

Project Updates: 

Infection Control Policy: Colleen reported on the topic of having more then one CFer be "in the room" at the same time (example a council meeting.) She shared, when the CFF Guidelines came out Cathy had adopted them. After CF Education Day the team looked into revamping the guidelines / policy. 

Pro's to a change in guidelines / policy :  

• more interaction between CFers, 
• increase in attendance   
• feeling a bond belonging to a group when you attend 
• the group being more cohesive

Con's

• The worry that a CFer would sue if he or she caught a bug etc. 

A suggestion was CFers could attend meetings in person at their own risk and use common sense. If your sick then you call in or webex to a meeting. Colleen is going to speak with Dr. Paul Mohabir and Dr. Carlos Milla regarding the new policy change. 

Council Member Commitment: Over the last few months the council has experienced a decrease in membership and wanted to get everyone's feedback on if there were any issues or concerns we needed to address. Shortening the time of meetings came up. The council meetings run from 5:00pm - 6:30pm, they used to run from 5:00pm - 7:00pm. A suggestion during the normal work week 5:00pm is when people are picking up kids and getting off work, maybe changing the start time to make it more convenient for everyone. Do we need to have monthly meetings? Can we have meetings every other month? Throughout the month council members stay on task and keep up with action items and new topics through email. A suggestion for the council to ponder is the proposed change where we will have less meetings for normal (one meeting every 2 months) while officers will still meet monthly (normal members are welcomed to join). If we change the meetings we will need to vote on this at next months meeting.

Ideas for Improving our Visibility and Increasing Membership: The council has a Facebook page, a insert spot in the Newsletter and the meetings get posted on the CF Stanford web page. What else can we do to reach out to the CF community. 

• Posting the agenda to the CF Patient Facebook Page
• Getting Meg and Jen on board to spread the word
• Posting on our own personal Facebook Pages to see if we can spark the interest. 
• Advertising more in the CF clinic with Members Applications, Flyers, etc.
• E-mail blast that goes out change name of meeting from CF Meeting to CF Adult Advisory Council.   (Colleen to contact Tom Metz regarding this change) 
• Council members that know anyone with CF that wants to join direct them to Colleen, or the council website to learn more about the council. 
• Look at the Council website and think of ways to revamp it.

CF PAC Project Update - CFF Collaboration : Back in June Brain had 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. Within three months CFF will contact the council regarding the virtual clinic proposal. Brian received his follow up call from the lady at CFF and she shared there is a clinic in Rochester New York putting together a website to enable collaboration between the clinic and patients. She asked if she could contact Brian and discuss some of the work we have done. He replied back with a yes and looks forward to hearing from them. 

MyHeatlh Update: MyHealth Team following up with interviewees what changes have been made. Phase three of the interviews are being scheduled.

Clinic - Patient Opportunities - 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." Elika already committed and is on board with publishing an article in the next upcoming Newsletter regarding new policy and changes in the clinic. Another suggestion the council shared was that what if each patient could discuss with the doctor during a clinic visit and get "approved" to be able to call in for an oral antibiotic, which could be agreed upon at the visit based on the latest sputum results. Is this a solution to the issue and can this be done? Angel will email Elika and get her thoughts on this suggestion and report back to the council. Elika did report to Angel that at this time there are no issues or concerns from the clinic. The clinic just had a quality meeting that Elika is willing to brief the council on. Basically it's a visit for all annual labs, questioners etc. Angel suggested that she would contact Elika to see if we can get a commitment for her to join next months meeting. 

Patient Family Partner Board: On July 30, 15 to 20 people gathered to discuss best practices in Stanford. Discussing concept of roles and trying to get a second adult council accomplished. 

Eighth Annual Summit for Clinical Excellence. Stanford LPCH will be having a round table discussion with patients and doctors in November and December. 

NACFC contact- This conference is to track meetings, goals from the adult advisory council and contact the Northern American Foundation. 

Tasks Assigned:

Colleen: To contact Tom Metz to change the meeting name on the webex information email                                         

Colleen: Contact Cathy Hernandez so she can post the agenda each month on the Stanford webpage as well as the Stanford CF Center Facebook page.

Colleen: Put information and application forms about the council in the waiting room at clinic.

Colleen: Contact both Dr.'s Milla and Dr. Mohabir regarding the new policy change. 

Angel: Contact Elika regarding the suggestion for oral antibiotics.

Angel: Contact Elika about Facebook Topic " low pft baseline" issue.

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

Angel: Check on the status of the Newsletter article regarding new changes and policy from the clinic.

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

Brian : Follow up with Joan to investigate "parking cheats" for "unique cases."

Monica: to post on FaceBook page advertising about us.  

All council members consider the proposed change in meetings where we will have less meetings for normal  (one meeting every 2 months) while officers will still meet monthly  normal members are welcomed to join)

Meeting called to a close at 7:00pm

Next Meeting October 15, 2014