ICN Virtual House Party 5 24-16

May 24, 2016 | Follow along on: #myicn
Building our IBD Improvement Community

Welcome! Let’s start the
conversation…
Type in the chat/question
box:
• What is your role in the
ImproveCareNow
community?
• If you are a guest, what
piqued your interest in
this call?
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Welcome!
If you typed your
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you are already
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attendance
If more than one
person is viewing,
please type
additional names
in the chat box
Please do not use
you phone’s hold
feature, but
rather place the
call on mute
This call is being
recorded.
3

(Virtual) parties are…
• Great for meeting new people
• Crowded (in a good way!)
• Casual (people may drop in and out)
• …and may run just a bit later than planned!
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What Do We Want To Accomplish?
You will be able to describe the various ways
that the ImproveCareNow Network is growing
and working to forge closer ties between all
members of the community
You will have one action item you can take in
the next week to become part of—or further
build—the community
6

Please respond to these poll
questions:
Thinking about your own care, has your care
team asked you to share ideas for improving
the care they provide to all patients?
Have you been involved in creating and/or
implementing solutions to an identified issue?
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Our Community: A Learning
Health System
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ImproveCareNow aims to…
Transform the health, care and costs for all
children and adolescents with Crohn’s disease
and ulcerative colitis by building a sustainable
collaborative chronic care network, enabling
patients, families, clinicians and researchers to
work together in a learning health care system
to accelerate innovation, discovery and the
application of new knowledge.
10

Specific Goals of our Learning Health
System
1. Improve the care and health of all children and
adolescents with Crohn’s disease and ulcerative colitis.
2. Engage and empower patients and families to participate
as true partners in all aspects of the ImproveCareNow
Network.
3. Transform care through innovation and discovery.
4. Achieve the best care at lower cost.
5. Ensure the sustainability of the ImproveCareNow Network
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Learning Healthcare System
Patients and providers
work together to choose
care based on best
evidence
Drive discovery as natural
outgrowth of patient care
Ensure innovation,
quality, safety and value
All in real-time
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They all have a story.
AND they all have knowledge,
ideas, and talents that will help
improve care.
13

From Network to Community…
15

From Network to Community
Communities have stories
Communities grow
Communities are made up of smaller
communities
Communities learn together
Communities celebrate each other
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How you participate in the community
depends on your time, interest & talents:
Join or refer patients and families the Parent
Working Group or Patient Advisory Council
Partner within your local center
Use Smart Patients as a peer-to-peer community
Join a research team or submit a research idea to
the ImproveCareNow Research Committee
Share your story
If you’re working outside of IBD care, learn with
us and apply these ideas to your community
Stay connected!
17

From National to Local to Individual:
Finding your community
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Building our Core: Partnership at
the National Level
19

ImproveCareNow from the Patient
Advisory Council Perspective
Alex Jofriet
21

What is ImproveCareNow?
ICN is a network of 87 centers nationwide and
in the UK that shares information in an effort
to improve outcomes.
22

What is the PAC?
The PAC is a group of 19 patients (and
growing!) that serve as the voice for the
24,600 patients at ICN centers in the network.
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Bianca Siedlaczek
Diagnosis: Crohn’s
ICN Center/Hospitals: C.S. Mott
Children’s Hospital
Victoria Edwards
ICN Center/Hospitals: Pediatric
Specialists of Virginia
Tyler Moon
ICN Center/Hospitals:
Nationwide and St. Louis
Children’s
Christian Hanson
ICN Center/Hospital: Boy’s
Towns National Research
Hospital

What does our impact look like?
26

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The PAC has….
“Given me a group of similar-minded people who have allowed for
real changes to be made to healthcare in ways patients want change
to be made”
“Allowed me to open up about my disease and has given me the
chance to expand my support system”
“Given me the opportunity to raise awareness and educate others
about my disease”

What can clinical teams do?
Talk to at least one of your patients in the next
week about the PAC and have them send the
PAC an email
Present a project to the PAC and ask for
feedback during PAC monthly calls
28

What can patients and parents do?
Patients can join the PAC or get more
information by emailing us at
pac@improvecarenow.org
Parents can join the PWG and/or recruit their
kids to be members of the PAC
29

What are some other things you can
do?
Check out our social media @ICNPatients
Listen in on a PAC call
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Virtual House Party
Parents’ Perspective
Kim Fracchia,
Lebonheur Children's Medical Center, Memphis, TN
Keri Goldberg
The University of Vermont Children's Hospital
Burlington, Vermont
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What is the Parent Working Group?
The Parent Working Group (PWG) is a group of 125 parents from
care centers throughout ICN’s network.
We meet monthly via webinar (second Sunday of every month from
7 – 8 pm et) to share innovations from across the network and to
learn the best way share new ideas with other parents at our home
centers.
Our upcoming webinar (June 12th at 7 pm et) will highlight
psychology and social work to learn more about what parents can
do to help the mental health of their child.
Our membership is open to any parent at an ICN care center –
please join the PWG by visiting www.icnparents.com
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Thomas' Journey, Age 16,
Crohn's Disease
Our Journey Begins....
Thomas begins losing weight,
wouldn't grow. He didn't have
enough energy to go to school and
when he did go to school he would
want to go to bed as soon as he got
home. We knew something wasn't
right but we weren't sure exactly
what it was.
We decided to take him to his
pediatrician for a check-up and she
immediately sent us to Lebonheur
since his blood counts were so low.
After 3 blood transfusions and a
colonoscopy, he was diagnosed with
Crohn's Disease.
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Improve Care Now has enriched our journey....
• Lebonheur GI joined ICN in 2014 and I was asked
to join as the lead parent.
• Because of ICN, our center has began IBD Teach
Speaker Series that are held 4 times a year. The
teens have a group with a psych intern during
this time and the children have their own group
as well with the Child Life Specialist.
• We are beginning a mentor program and already
have a network of parents that help each other.
• As an IBD community, we are supporting each
other and educating each other about the best
way to help our children cope with IBD.
34

Parker’s Journey: Age 9, Crohn’s Disease
My name is Keri Goldberg, I am with The University of Vermont Children’s Hospital, in
Burlington, Vermont
IN 2014, At age 7: Parker was diagnosed with Crohn’s Disease
His road to diagnosis
His Treatment
Improve Care Now: His Second Treatment, Magan (ICN Coordinator), Signed up for ICN
One Month later… Importance of this for Patients and PARENTS!!!
Later that year, connected with Parker’s Dr.- Mike D’Amico- Connected me back with
ICN and asked me to be the parent lead
My first task was to do something for Parker and the local committee. We organized
a fundraiser for Crohn’s and Colitis.
With help from Justin, we got a booster program together for a local marathon
called, Crushing Crohns and Colitis.
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The Journey Forward
It was empowering and I feel like “Crushing It” has become a huge part of our
lives and our community, with bigger things to come.
Parker is a big skier and lacrosse player and everyone now asks us…IS HE
#CRUSHINGCROHNS today?
We are in the midst of an organizing an organic grassroots walk in the fall and
without the ICN family, this wouldn’t be possible.
Now I meet parents of other kids who are battling diagnosis of diseases who I
feel I can support and offer guidance too both patients and parents.
I am grateful for ICN every day | I am now part of the larger hospital
network- I am now on the University of Vermont Family & Patient
Advocate Counsel
Having research and a network this powerful is something to be shared and
multiplied. It truly is a 360 approach to your child’s care.

What you can do: Get involved at the
National Level
• ImproveCareNow centers:
• Tell a parent and patient about how to
connect with the Parent Working Group
and Patient Advisory Council this week!
• Parents, patients, and others:
• Connect with the PAC and PWG this week!
37

Notes from the Field:
Partnership at the Local Level
Children’s Mercy &
MassGeneral Hospital for Children

Setting the Stage: Engagement and
partnership as part of our culture
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A Robust Partnership: Children’s
Mercy Hospital
Julie Bass, Jamie Hicks & Shawna
Ricks

Creating Consistent Care
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1. Parent feedback on gaps in care
2. Identifying stakeholders
a. Stakeholder analysis – with this group we need build in not buy in
3. Developing Structure – topics for discussion
4. Stakeholder meeting – where we want to be
5. Putting it to Paper – Provider Handbooks
6. Next Steps – Applying basic quality improvement tools- failure modes
analysis and key driver diagram

Laying the Groundwork:
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Located in Boston, MA with 13 satellite centers in MA, NH,
and ME
Target pediatric IBD population of ~700
Part of ICN since 2009
Large Pedi GI staff
23 attending physicians
4 core ICN providers
3 nurse practitioners
4 outpatient nurses
6 fellows
7 clinical research coordinators (1 ICN coordinator)
4 dieticians
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…and no parent partners…
…until January 2016!
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Why did we decide to get involved now?
Knew we had parents who wanted to be involved
Wanted to know how parents wanted to be
involved
Wanted to shift the dynamic towards equal
collaboration between provider and
patient/family
Wanted family feedback on several specific ideas
52

What did we do?
The hard ask!
“At this time, we would like you to join us for a parent focus group meeting on January
31, 2016 at Newton-Wellesley Hospital – Bowles 1 Conference Room from 4 PM – 6
PM. Dinner will be provided. We encourage you to consider partnering with the IBD
team at MGHfC to improve care for our children with Inflammatory Bowel Disease. We
value your experience and ideas, and we look forward to working with you.
Sincerely,
The IBD Team:
Pediatric Gastroenterology & Nutrition”
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Parent Engagement Event – 1/31/16
18 parents (representing 15 patients); 4
physicians, 1 research coordinator, 1 nurse
Agenda
Overview of IBD Center
Overview of ICN
Breakout exercise (“Through the Eyes of the Parent”)
Dinner
Introduction to co-production
ICN PAC and PWG
Parent Feedback Survey
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Parent Feedback
Survey
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Takeaways
Parents appreciated the chance to be involved
And they want to get more involved!
7 parents were interested in attending ICN CC
Brought three awesome parents with us!
In the process of building a parent-to-parent
mentoring network
Based on networks from other centers and other divisions at
MGHfC
If you want parent involvement, make the hard ask!
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What you can do: Celebrating and
Spreading Stories of Local Partnership
• ImproveCareNow centers:
• Share a story of how you’ve partnered via the
ImproveCareNow story card
• Parents, patients, and others:
• Share your idea re: improving care at the local level via
the ImproveCareNow story card
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What have you witnessed or been a part of that has helped kids with IBD
get better? What is proof to you that ImproveCareNow is getting kids with
IBD back to doing the things they love?
What is your idea for how we can continue improving care and health for
kids with IBD?

Staying Connected as an Individual
Member of the Community

Connecting and learning as peers
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Learning from SmartPatients
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Staying Connected via Social
Media

What can you do today? By next Tuesday?
Connect with ImproveCareNow
• Choose the platform that’s right for you and
connect
Help another person connect
• Set a goal to connect one other patient,
parent, colleague
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Thank you for helping us build more of this!
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Questions?
info@improvecarenow.org
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ICN Virtual House Party 5 24-16

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