"06-17-2015 Minutes"

Stanford Adult Cystic Fibrosis Patient Advisory Council Minutes

Date/Time: Wednesday, June 17, 5:00pm-6:10pm 

1.    Introduction (5:00 – 5:10)

Present – Lauren, Colleen, Jay, Ed, Shawn, Devin, Brian

2.    Adopt May minutes (5:10)

Minutes were adopted.

3.    CF PFAC Project Update – (5:10 – 5:40)

a.    CF Encounters – Lauren

The stories, approximately 10 in all, are being generalized and polished prior to review by the contributing patients.  Goal is to get contributor approval for presentation to the council at the next council meeting.  The effort to gather stories will continue.  It was noted that this would be an ongoing project, and recommended that Joan and Mary be used as resources if any help or suggestions are necessary.

b.    Issue Management Protocol – Angel/Monica/Elika
Following questions were sent to Meg for her input.  Response is as follows -

What are the best ways to advocate for ourselves when we feel hurt/confused/angry inappropriate commit or encounter from a staff member? 

Response from Meg - The best way to advocate in these situations is to address the issue in the moment it occurs with the provider.  CF team members are human and will have bad days, say the wrong things, or act inappropriately.  Sometimes the provider will be clueless about his/her behavior and could really benefit from constructive feedback.  Perhaps the provider is new and said something ignorant.  If the patient doesn’t say anything, the provider may keep doing that same thing over and over again.  While it can be incredibly uncomfortable and downright scary, it is most productive (for both patient and provider) to call out the problem right away. 

If this isn’t possible, I recommend that the patient come to me for coaching and counseling.  I will coach the patient around their emotions and options.  Sometimes, the patient just needs to vent and that’s good enough.  I often ask the staff member on behalf of the patient to please follow up with the patient to resolve the issue.  Prior to the patient filling out a formal grievance to Guest Services, the issue should be addressed with the center director, in this case Dr. Mohabir. If the patient is extremely angry or upset and the issue cannot be resolved as a direct conversation, the last resort would be to file a formal complaint with guest services at (650)498-3333.  Guest services has an official complaint protocol.  Using this approach, guest services acts as an intermediary between the patient and staff member to try to resolve the problem in the most optimal, patient-centered way. 

Are there different approaches as far as advocating when a patient is an inpatient vs. an outpatient?

If the patient is inpatient, I will provide counseling and coaching at the bedside. If the patient desires, I will ask the staff member to return to the patient’s room to talk through the problem.  If the patient is outpatient, the patient can follow the advice in my first and second paragraphs.  I am always available by phone or email to address problems or issues patients encounter.  I am used to getting complaints and it’s part of my job.  There are some problems that just cannot be solved such as personality conflicts or systems issues.  If a patient has a problem with a staff member’s personality, I can provide counseling to minimize the friction for the patient.

Feedback from council members: Answers seemed spot-on, provided several levels of response.  Very clear way to proceed.  Great.  Devin requested an email version (assume these minutes would be sufficient).

c.    Virtual Meeting Proposal/Online Collaboration

Coordination with CFF and external clinic development – Shawn (get write-up from Shawn)

d.    Clinic-Patient Opportunities – Angel/Monica/Elika Status
CF Clinic hired a new full time Nurse Coordinator Julian Laing, RN.

4.    Action Items from Previous Meeting (5:40 – 6:00)

a.    Angel: Follow up with Parking and Transportation on Parking Perks.

Angel had a scheduled meeting with Taye from Parking and Transportation yesterday June 17^th from 12:30pm 1:30pm to discuss possible parking perks for CF patients. Taye did mention in an email “Note: The parking team is currently receiving multiple request for exceptions at all of the valet locations from multiple programs. Due to the increase car volumes, exceptions are very limited. We encourage our patients from all programs to utilize the self-parking garage located on S. Pasteur (PS4) and the frequent tram service (every 10min).”

b.    Angel: Contact Meg once procedure for Parking Perks has been established. See if Meg can provide verbiage for this perk to be posted on the Facebook page. 

Will update based on June 17th meeting results.

c.    Devin: Post Baseline Determination and The Return Patient Questionnaire Form to the Patient Only Facebook Page.

Baseline Determination document posted, PQF is awaiting feedback from council meeting prior to posting.

d.    Brian: Follow up with the MyHealth Team regarding uploading the RPQ form.

Contacted MyHealth website help about adding a form for download to patients.  The response did not seem to reflect understanding of the need, a follow-up question was not answered.  It is probably best to address this through the follow-on MyHealth interviews, also by working with the clinic.

e.    Brian, Angel: Contact Vertex and the clinic regarding readiness in the case that the new combo drug is approved. 

Vertex was contacted and weren’t prepared to provide any recommendations at this point.  Brian will follow up in July to see if there are any new developments.  The clinic will be contacted prior to the next meeting to see if there is anything that we can help on with regards to patient readiness.

f.     All: Council members continue to complete Volunteer Requirements.

Devin got his badge, Brian got his health tests.  Lauren will get her badge by next meeting.

g.    Brian, Colleen: Follow up issue on WebEx link showing wrong day/date

Fixed by Angel.   New Action - Can security setup meeting at 4:50 PM, or can volunteer badges provide access.

5.    Reminders

a.    Publicize Council and council activities

b.    If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.

c.    Future Project: CF Patient Medical Compendium.
Examples: A list of all diagnosis, nebulizer usage, last time air filter change for compressor, etc.  Forecast to start new project sometime this fall.

d.    New action – final recommendations on PFQ form to Jay by all members by next council meeting.

6.    Final Comments/Discussion (6:00 – ??) 

 None

Next Council Meeting on July 15, 2015