"07-15-2015 Minutes"

Minutes of Stanford Adult Cystic Fibrosis Patient Advisory Council

Date: 7/15/2015

Attending: J Archibald, E Kinney, M Harding, S Taylor, A Hayes,

D Wakefield, L Catron, C Dunn

Absent: B Eddy

Non-Council members attending: M Song, J Scott

1. June minutes adopted.

2. Infection Proposal Discussion – Colleen discussed the current outpatient pediatric infection control policy. The pediatric council brought this topic to the Adult committee, they would like to have the Adult center follow the same IC policy.  The Adult Council is willing to work in a sub-committee to entertain the idea of adopting the pediatric infection proposal.
Action Item: S Taylor, L Catron and C Dunn to work with a member of the Pediatric Council to discuss further. Colleen to identify a pediatric advisory council member.

3. PFAC'S Feedback Formal Visiting Program for CF Inpatients – Joan met with Ed to discuss his role in the CF center, and Joan supports him 100%. The council unanimously voted that Ed’s role is critical. The plan going forward is to have a formal visiting program that will not violate HIPAA restrictions.  One option would be for older, more established patients to email Ed directly when admitted. The bigger issue is how to have new patients informed about his role.
Action item: M Song, J Scott and E Kinney to work with Meg to formalize a plan going forward.

4. CF PFAC Project Update –
    a. CF Encounters –Devin sent scenarios to the Council prior to this meeting.
Action item: all members to review before next meeting.
Angel: to look back in minutes from prior months, to identify the next steps.
Joan may be able to help create a document, based on these scenarios as an education tool for staff members.

b. Issue Management Protocol – Angela & Monica are working on a template decision tree for escalation of issues encountered in the clinic or hospital. The Council agreed that patients should have the right to contact Guest Services. This will be incorporated into the decision tree.

Can Dr Mohabir vote on Council issues?  The CF Council guidelines are not in agreement with the Stanford patient Advisory Council Bylaws. Other councils have active physician representation. Physicians and staff do vote. Mary would like our Council to be in line with others.
As per M Song, having people register concerns with Guest Services does not impact clinic accreditation.
Action item: M Song to discuss our by-laws further with Brian offline.

c. Virtual Meeting Proposal/Online Collaboration Coordination with CFF and external clinic development – Shawn described the 2 projects that they are working on. One is the “Right to Receive the Proper Care”, the second is:  “How to advocate for one’s self  and to Alleviate Stress”.

d. MyHealth update – Jay and Monica have signed up their next MyHealth meetings.
The returned patient questionnaires (RPQ) – Jay is taking this form to the MyHealth team to discuss possibly putting this document on the MyHealth system. Jay will forward the most current version to those who did not have the opportunity to look at it.
So far, the Council does not feel that it has been distributed to patients. Are the pulmonary function people doing this? Or front desk people? Also, Jay mentioned, this document can be completed and printed out prior to clinic for use during the visit. Monica felt getting the document with the RT is not helpful, getting when checking in makes better sense.
Action item: Angel to discuss with Elika and Ronni who will be distributing the RPQ in clinic.
Jay: To follow up with the MyHealth Team regarding uploading the RPQ form as part of MyHealth interviews.

e. Clinic-Patient Opportunities – Dr Mohabir wants to meet 2 – 3 times a year with the Chair, the Vice-Chair or the Secretary and would like the day of meeting changed (from 3rd Wednesdays to 3rd Tuesdays). The Council voted and all agreed 3rd Tuesdays are acceptable.
Action item: Colleen to contact B Eddy to confirm that he can also attend Tuesday vs Wednesday meetings. Colleen confirmed B Eddy is ok to change and email sent to J Scott and M Song. Joan and Mary are setting up WebEx and room reservations. 

f.  Angel met with the Parking Transportation Group. They want to work with the clinic as a pilot. Meg has been identified as the person for follow-up. (Meg is currently on vacation)
Action item: Angel to touch-base with Meg.

 Action item: All to continue to complete Volunteer Requirements. 

 Action item: M Song to find out if the conference room door can open at 4:50 instead of 5:00 so security doesn’t need to provide access in time for meeting start.

6. Closed session
The Council discussed the possibility of moving toward a 15-minute closed session toward the end of the meeting. This time would allow CF patients on the Council to discuss matters (live and in person) vs a chatroom. Member felt this would be very important, especially to new Council members.

7. Action item: Angel to forward the Orkambi statement written by Ronni discussing the process to obtain the newly approved drug to Cathy Hernandez for posting on the Stanford CF Center Website. Angel will also post the statement on the private Adult Patient Only Facebook page.

8. Action item: (with respect to getting Orkambi) Monica to post on private Adult Patient Only Facebook page if patients have participated in the research and think they have had a genotype or sweat done. They should contact Colleen, who will investigate and provide the necessary documents to Ronni, if they exist.

9. Meeting is adjourned. Next meeting will be Tuesday, August 18, 2015.