"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

"05-20-2015 Minutes"

"05-20-2015 Minutes"

Members Present: Brian, Devin, Angel, Shawn, Jay,

Members Absent: Colleen, Monica, Lauren, Ed

Guests: Caron

Council Votes: April's Minutes Approved

Project Updates:

CF Encounters: Lauren and Devin have received 10 valuable encounter stories. Once each story has been re-written they will contact each individual who provided a story to verify all the information. This will allow the individual to add any additional information to their encounter story. Devin asked the council for feedback about changing the vision of the project to reflect positive encounter stories.
Devin explained if we just present negative stories it might be frustrating or hurt someones feelings. Since the goal of the project is from an education perspective, no one should take offense to the encounter stories presented. If the encounter story can  be presented in a unique way by identifying the good deed into a learning experience, then yes positive encounter stories can be used.

Issue Management Protocol: May's Support Group Session focused on the Issue Management Protocol Project. Monica and Angel received a lot of feedback. In keeping with the rules of the Support Group Session all names and attendees are kept confidential. Our next step is to contact Meg and go over the notes from Support Group Session and gather feedback from Meg on a clinicians point of view. After we received all data we will collaborate with the council and thus create a "Decision Tree Flyer" for patients to use in clinic or in the hospital.

Coordinating with CFF and External Clinic Development: Update on the C3N Project. Shawn shared with the council the group is gearing up for a two day virtual conference next week. The conference is being held in the Washington/Maryland area. It's under the direction of CFF. Shawn will send out an email to the council members regarding the topics being discussed at next weeks virtual conference. He also learned CFF has their own Patient Questionnaire Form that gets sent out to all clinics twice a year. The form includes general questions about the clinic and helps clinics accreditation. The form is suppose to be handed out to patients from the clinics. Once Shawn receives the form he will share it with the council and make sure the clinic has a copy as well.

Clinic Patient Opportunities:  The Baseline FEV-1 Determination had made it's debut in the Cystic Fibrosis Center Newsletter. Just a quick refresher on how this topic came about; the council presented the topic to Elika a few months after we noticed a post in the Patient Only Facebook Page. To view the article click on the link :http://cfcenter.stanford.edu/facts/newsletter.html.

Monica shared with Angel via email during the last few clinic visits she was not given the Return Patient Questionnaire Form to fill out. She wanted to bring this topic up to the council so we can help education the front desk staff. Other council members have also noticed they have not been receiving the form on clinic days. Brian checked out MyHealth to see if there is a section to upload the form so patients can download the form before their clinic visits. There is a section, and he sent out an email to the MyHealth team and is awaiting a response back. Angel checked with the clinic staff regarding this topic and was given the contact of Linda Green (Unit Manager). Caren will send Angel, Linda Green's contact information so we can touch base with her and solve this issue.

New Project: Brian mentioned with the FDA expected to make a decision on the approval of lumacaftor/Ivacaftor by July 5th, maybe we should look into contacting Vertex about finding out ways to help patients fight the insurance battle. The council agreed this is a great idea. Brian and Angel will reach out to both Vertex and the clinic to gather feedback.

Council Website: The Cystic Fibrosis Center Stanford Website is new and improved. Check it out!!
http://med.stanford.edu/cfcenter.html

Caren shared with the council her last day is June 19th. We are sad to see her go. A big THANK YOU for all your hard work, and support throughout the years. We very much appreciate it!

Action Item Follow Ups from Previous Meeting:

Colleen and Brian: Colleen contacted Karrie regarding a Protocol for the CF Conference Room. Karrie is going to contact the IT group to see if starting Web Ex system off site is possible. Karrie will follow up with Colleen. A temporary solution if we are having problems with the system, is to detail the problem and email it to Karrie so she can follow up. Caren shared with the council Kevin is the IT guy to contact. His email address is on the bottom of our agendas. Caren will provide us with his contact information. If no one is in the room (staff wise) we can still have our meetings through Web-Ex Audio. Teleconference is if someone is in the room and starts the meeting by pressing the green button.

Angel: Sent Mary Song an email  regarding Volunteer Requirements to make sure the council is up to date. Colleen was copied on the email. Mary Song is scheduled to be in contact with each individual council member regrading their volunteer requirement status.

Angel: Emailed Parking and Transportation on Parking Perks. Still no response. She is going to send an email to Joan Scott to see if she can provide some assistance in reaching back out to Parking and Transportation.

Action Items:

Devin and Monica: Send bio's to Jay to be inserted on the council website.

Jay: Send Devin the Return Patient Questionnaire Form.

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

Angel: Contact Linda Green regarding the Return Patient Questionnaire Form.

Brian: Follow up with the MyHealth team about uploading the Return Patient Questionnaire Form.

Colleen: Follow up with Karrie regarding the status of IT Web Ex off site.

Brian and Angel: Contact Vertex and the clinic regarding the new project.

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.

Lauren and Devin: Continue working on CF Encounters Project.

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

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

All: Council members continue to complete Volunteer Requirements. Angel will follow up with each council member with their updated status's and cc Mary Song on the email.

Future Project: CF Patient Medical Compendium. Brief summary: A form to list all diagnosis, and last time air filter change for compressor, etc.  Forecast to start new project sometime this fall.

Meeting called to a close at 6:05pm.
Next Council Meeting on June 17, 2015

"04-15-2015 Minutes"

"04-15-2015 Minutes"

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

Members Absent: Lauren, Ed

Council Votes: March's Minutes Approved 

Project Updates:

CF Encounters: Lauren and Devin have received a handful of valuable encounter stories. Asked the council for suggestions to help brainstorm ideas as to how to collect more stories. Suggestions from the council: post project again to the Facebook Page, scan through older Facebook posts to see if an encounter was mentioned and try contacting the person directly to see if you can use their encounter experience. Next step is to start re-writing, and collaborating on verbiage. 

Issue Management Protocol: Monica and Angel collaborated with Devin and Lauren to see if any of their encounter stories they received could help shed some light on their project. Devin and Lauren recommended asking scenario questions, for example "what if you're in-patient and you really don't like your nurse" Also posting the topic to other CF Facebook groups. Lastly reaching out to other social media group such as: Tumbler, CysticLive, Twitter etc. Monica contacted Meg about centering an entire support group session around this topic. Meg loved the idea and will come up with a creative way to turn it into a topic that could not only be therapeutic for people to discuss but also helps us with our project. 

Coordinating with CFF and External Clinic Development: Update on the C3N Project. Shawn shared with the council the group has been working on the topic How To Improve
The Clinician Work Experience. For example: If a clinician is having a bad day how can they stay positive for patients.? The groups is looking into ideas to help promote a happy positive environment for clinicians which will overall help with staff and patient interaction.  

Clinic Patient Opportunities: A recurring topic on the Patient Only Facebook Page -  CF Services Pharmacy not distributing medicines to California. Since Ronnie is sliding into Jennifer's NP role we want to collaborate with the clinic to bring helpful tips to patients and give the clinic a heads up on this topic. Elika, Jennifer, and Ronnie appreciated the heads up on this topic. They are in the process of contacting the pharmacy reps to address this issue. There understanding was that only patients with Medicaid (MediCal and Medicare) were being affected but it turns out it's also affecting patients with private insurance. At this time CF Services Pharmacy is not distributing medicines to California because they are waiting on their contracts to go through. Elika mentioned Ronnie was meeting with a pharmacy rep on Thursday for clarification and trouble shooting. 

Council Website: Jay mentioned Victoria sharing with the council about adding two sections to the website: a Past Member Section, and a Memorial Section for members who are no longer with us. 

Action Item Follow Ups from Previous Meeting:

• Monica emailed Colleen a topic for next years CF Ed Day. Topic - Adult Nutrition. 
• Monica contacted Meg about Issue Management Protocol project being the topic of Support Group. 

Action Items:

• Devin and Monica: Send bio's to Jay to be update on the council website. 
• Colleen and Brian: Collaborate on a Protocol for the CF Conference Room. 
• Angel: Email Mary Song regarding Volunteer Requirements to make sure the council is up to date. Copy Colleen on the email. 
• Angel: Follow up with Parking and Transportation on Parking Perks. 
• 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. 
• Lauren and Devin: Continue working on CF Encounters Project.
• Monica and Angel: Continue working on Issue Management Protocol Project.
• 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 6:40pm.

Next Council Meeting on May 20, 2015

April 2015 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, April 15, 5:00pm-6:10pm
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)
2. Adopt March minutes (5:10)
   Please review Angel’s minutes on the blog or via her email previously sent to you
3. CF PFAC Project Update – (5:20 – 5:50)
1. CF Encounters – Lauren
2. Issue Management Protocol – Angel/Monica/Elika
3. Virtual Meeting Proposal/Online Collaboration

Coordination with CFF and external clinic development – Shawn

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

Status

5. Council Website

Input for potential improvements

4. Action Items from Previous Meeting (5:50 – 6:00)
1. Monica: Email Colleen suggested topics for next years CF Ed Day.
2. Monica: Contact Meg about sharing the Issue Management Protocol projects during a Support Group session.
3. Angel: Follow up with Parking and Transportation on Parking Perks.
4. 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.
5. All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.
5. Reminders
1. Publicize Council and council activities
6. Final Comments/Discussion/Reminders (6:00 – ??)

Adjournment - Next meeting May 20, 2015

Administrator invites you to this meeting. CF Adult Advisory Council Meeting Occurs the third Wednesday of every month effective Apr 15, 2015 until Mar 16, 2016. 5:00 PM | 2 hr (UTC-08:00) Pacific Time (US & Canada) This invitation is for the CF Adult Advisory Council Meeting taking place the third Wednesday of each month starting at 5 p.m. Pacific • 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. • 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 1830 Embarcadero Palo Alto, CA 94303 Office: 650-721-3991 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 restrictions

If you need the host key or cannot join the meeting using WebEx from this email message, go here: https://stanfordmed.webex.com/stanfordmed/j.php?ED=356680432 Need more details about joining the meeting using telepresence? https://10.243.78.17/tms/default.aspx?pageId=79&ConfId=29416&View=true Having trouble joining from a telepresence room? Get help. IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation.

"03-18-2015 Minutes"

"03-18-2015 Minutes"

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

Members Absent: Jay

Guests: Karen, Elika 

Council Votes: February's Minutes Approved 

CF Education Day Recap: CF Ed Day was a success! Great job to everyone who helped put this event together. There are extra books from CF Ed Day to give out to the clinics. If anyone is interested contact Colleen. Feedback on the Blue Jean system, it was different and couldn't see any of the speakers. Angel noticed besides Meg Dvorak, there where no other presentations from any of the Adult CF clinic staff.  Colleen mentioned if we want to hear a specific topic to let her know and she will reach out to the staff members. 

Save the date for next years CF Education Day on Saturday, March 5, 2016. 

Project Updates:

CF Encounters: Lauren and Devin posted their project on the Facebook page and other internet circles, and received 4 valuable stories. They plan to have a total of 10 + stories before re-writing starts. 

Issue Management Protocol: Monica and Angel posted their project on the Facebook page and have not received any responses. Ideas to help receive patient feedback bring up the project to Meg, and find out if towards the end of a support groups session we can share this project with the group. Also working with Lauren and Devin on collaborating between the two projects. 

Coordinating with CFF and external clinic development: Update on the C3N Project. Shawn shared via email with the council the group is looking into accreditation of the clinics and is seeing out ways to help them raise their accreditation levels. 

Clinic Patient Opportunities: Status 

• Baseline Determination: Once the article has been approved Elika will share the article with the council and we can post it to the Facebook page. 
• NP Questionnaire Update: Elika shared from a providers perspective the Return Patient Questionnaire form is working out great. It helps patients focus on what they want to get out of their clinic visit. 
• General Questions: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council. 

Council Website:  Pending 

Action Item Follow Ups from Previous Meeting:

Brian: Post PFCC Presentation to the Facebook Page. Pending.

Jay: Updated changes suggested by the clinic to the Return Patient Questionnaire Form and submitted the form back to the clinic. Changes and suggestions included changing the verbiage in the first question to read "List any recent changes to your medical routine." Another suggestions was under "Current Steroids Treatment" list Prednisone as the steroid and list all the inhaled steroids such as Advair, Flovent, Qvar and Pulmicort. 

 

Angel: Had a telephone meeting with the Director of Transportation Services and Transportation Strategy regarding what kind of parking perks could be made available to those CF patients that fall under the special/unique cases. 

Plan of Action: 

• Defined requirement for a CF patient to need these accommodations, and the number of patients. 
• Reach back out to Parking & Transportation find out what parking perks can be made available and what the procedure will be. 
• Notify CF clinic of the procedure and contact person.
• Post on CF Facebook page contact Meg for verbiage.

Overall Parking & Transportation is happy to help in anyway and appreciated the council reaching out to them. A possible procedure to avoid other Stanford patients or visitors all wanting parking perks, is to have the CF clinic pass out parking passes to those patients that fall under the requirements. It would be on a patient need to know basis. Elika suggested for this procedure to have a pilot run of a handful of patients for a 3 months time span. Angel will follow up with Parking and Transportation.

On March 25th Ed Kinney will be celebrating 33 years of Volunteering at Stanford.  

Congratulations and Thank You for all the work you have done, and continue to do for the CF Community!

Action Items:

• Monica: Email Colleen a suggested topic for next years CF Ed Day.
• Monica: Contact Meg about sharing the Issue Management Protocol projects during a Support Group session. 
• Angel: Follow up with Parking and Transportation on Parking Perks. 
• 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. 
• Lauren and Devin: Continue working on CF Encounters Project.
• Monica and Angel: Continue working on Issue Management Protocol Project.
• 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 6:05pm.

Next Council Meeting on April 15, 2015