September Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Tuesday, September 15, 5:00pm-6:20pm 

Location: Blake Wilbur  Room W1084 & Join WebEx

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.  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.

Agenda

1.    Introduction (5:00 – 5:10)
Welcome Back Annette Hernandez!

2.    Adopt August minutes (5:10)

Please review Angel’s minutes on the blog or via her email previously sent to you

3.    CF PFAC Project Update – (5:10 – 5:45)

a.    PFAC Update – Joan

b.    Infection Control Policy – Shawn/Lauren/Colleen

c.    CF Encounters – Lauren/Devin

d.    Issue Management Protocol – Angel/Monica/Elika

e.    Virtual Meeting Proposal/Online Collaboration – Erick/Brian

f.     Coordination with CFF and external clinic development – Shawn

g.    MyHealth update – Jay

h.    RPQ – Jay/Julian

i.      Informational Sheet on Masks – Devin

j.      Clinic-Patient Opportunities – Angel/Monica/Elika

4.    Action Items (5:45 – 6:00)

a.    Ed: Work with Mary, Joan and Meg to formalize an introduction plan going forward for volunteer services

b.    Joan: Explore the option of the phone line for CF Encounter Project

c.    Joan: Contact Security regarding getting Devin and Ed Badge Access to the Conference Room.

d.    Colleen: Check and see if the CFF Center Anonymous Box can be moved to the Adult Center Website.

e.    Jay: Email Julian or Elika updated RPF Form

f.     Brian and Joan: Set up quarterly meeting with Dr. Mohabir

g.    Angel: Send Shawn council member email list

h.    Brian/Colleen: Work with Mary on by-law alignment requirements discussion

5.    Reminders

a.    Publicize Council and council activities

b.    Continue to complete Volunteer Requirements

c.    Future Projects
CF Patient Medical Compendium

6.    Final Comments/Discussion (6:00 – 6:10) 
Next meeting October 20, 2015

7.    Closed Session (6:10 – 6:30)

Administrator invites you to this meeting. CF Adult Advisory Council Meeting Third Tuesday at 5:00pm Occurs the third Tuesday of every month effective Jul 21, 2015 until Aug 17, 2016. 4:55 PM | 2 hr 5 min (UTC-08:00) Pacific Time (US & Canada) This invitation is for the CF Adult Advisory Council Meeting taking place the third Tuesday of each month starting at 5 pm Pacific Meeting Begins at 5:00 pm WebEx and TelePresence Connections Open at 4:50 pm • Telepresence attendees please press the join button on your touch screen to connect. • WebEx attendees please click the green "Join Using WebEx' tab within this invite. • Next join the WebEx audio bridge by phone. Do not use computer audio. • Please mute your phone. • WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list. Questions call: Kevin Hurley Unified Communications Specialist Stanford Health Care Mobile: 650-272-7579 khurley@stanfordhealthcare.org Unified Communications Team: 650-721-2800 DL-SHCUnifiedCommunications@stanfordhealthcare.org Join Using WebEx Meeting password: a1820 Meeting number: 804383588 Join Using Telepresence Video address: 7527500@stanfordmed.org Locations: TP-900 Blake Wilbur-Tumor Board W1084 Audio Connection Call-in numbers Toll: 1-650-479-3208 Toll-free: 1-877-668-4493 Access code: 804383588 Global call-in numbers Toll-free calling restrictio

"08-18-2015 Minutes"

 "08-18-2015 Minutes"

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

Guests: Elika Rad, Joan Scott, Meg Dvorak, Julian Liang

Council Votes: July's Minutes Approved

PFAC Update: Joan provided the council an update on the Patient Family Partners Program. The PFPP has four components: Patient Family Advisory Councils (PFACs), Patient Family Faculty (formally Speakers Program), Peer 2 Peer, and Continuous Improvement. Since 2009 15 ongoing PFAC councils have been formed. Strategic Initiatives for 2015 are family/caregiver support and validation, staff support and training and the development of the Patient/ Family Faculty Program, where PFP helps design curriculum, format and act as teachers through speaking. What roles do patients and family partners play? They are Advisers, Advocates, and Partners. The partnership model is patients, family, staff and physicians all working together to identify a problem, define the problem and design together the solution. Everyone involved understands the value of having these councils.

Council Nominates Devin and Ed to be the back up members with badge access to the conference room. As of right now Jay is the only council member with badge access. Joan will work with security to get badge access for Devin and Ed.

Project Updates:

Infection Control Policy: Colleen is working on appointing a member from the Pediatric council. Suggestions and feedback from the council is to have the Pediatric council participant / Parent join one of our council meetings for an open discussion on this topic. Understand the reasoning behind the isolation. Properly addressing any fears, issues or concerns. Collaborate from an adults perspective regarding the transition process from peds clinic to the adult clinic. Also to contact the CF Center Directors Dr. Carlos Milla and Dr. Paul Mohabir for input on this topic.

Parking Perks: Meg shared an update on the Parking Perks Project. After meeting with Parking and Transportation, a drafted Cystic Fibrosis Patient Valet Parking Pilot was created explaining the purpose, process and procedure. A total of 20 executive parking passes were given to the clinic. The passes allow CF patients who require oxygen tanks to park in any of the valet areas such as: the Blake Wilbur Building, ER and the Fountain Entrance. The passes are valid for one time use only. Parking and Transportation wants to be able to track the frequency of the passes. The pilot run for this program is from August 10th - November 13th. Meg will share more data on this topic towards the end of the pilot run. The patients that have received the parking passes are surprised that this is a service made available to them.

CF Encounters: Lauren and Devin shared a few stories that have been approved by the sharer via email to the council for review. Council approved the format. They are continuing to finalize the other stories that have been collected. Asked the council for suggestions on ways to collect more stories. Joan suggested using a phone line already set up in the Cancer Center that is no being used as a way for patients to call in and offer feedback. A concern is keeping with confidentiality rules who will be checking the messages, and who would be transcribing them. Colleen suggested using the CF Center Anonymous Box located on the website. Finding out if the box can be moved to the Adult Center website. What is the next step once all the stories are finalized. Joan will help the council brainstorm ideas of how to present this to other PFAC groups as an education tool to help improve the partnership model.

Issue Management Protocol: Monica and Angel decided a flow chart design would work best for the Decision Tree Flyer. Jay is working on the design of the flyer. How will the flyer be distributed? The flyer can be available in clinic as a hand out, and incorporated in new patient packets and admitting paper work.

Coordinating with CFF and external clinic development: Update on the C3N Project. Shawn shared that everything we are discussing in this meeting the group is currently working on. Are other hospitals using the Virtual Clinic Concept and is it working? Yes, there are other centers using the concept and it seems to be helping patients. Especially those patients that live far from their hospitals. Is Stanford using the Virtual Clinic? Joan will provide an update at the next council meeting. Erick volunteered to help with this project.

MyHealth Update: Jay has a meeting scheduled on September 17th.

RPF: Jay updated the changes suggested by the clinic and sent the revisions to the council members for review. Jay will email Elika or Julian the revised RPQ form. Next step is to see if the form can be uploaded to MyHealth for patients to fill out before clinic visits.

Clinic Patient Opportunities - Change in Clinic Day Update: New clinic days are Wednesdays and Thursdays. The first Thursday clinic day is September 10th and the last Friday clinic day is September 11th. Letters have been sent out to patients explaining the change in days and rescheduling phone calls are being made. The perk of having Friday open is staff can follow up on patient phone calls, call in refils, etc.. before the weekend.

Action Items:

Joan: Explore the option of the phone line for CF Encounter Project

Joan: Contact security regarding getting Devin and Ed  badge access to the conference room.

Colleen: Check and see if the CFF Center Anonymous Box can be moved to the Adult Center Website.

Lauren and Devin: Continue working on CF Encounters Project.

Monica and Angel: Continue working on Issue Management Protocol Project.

Angel: Send Shawn council members email list.

Jay: Email Julian or Elika updated RPF to give to the front desk staff.

Brian, and Joan: Set up quarterly meeting with Dr. Mohabir

Devin: Update on information sheet for masks.

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

Meeting called to a close at 7:19pm.
Next Council Meeting on September 15, 2015

"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.

"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