Our Learning Health Community: So Much to Celebrate!

Welcome! Let’s start the
conversation…
Type in the chat/question
box:
• How many years of
experience do you have
living with IBD and/or
caring for someone with
IBD?
2

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This call is being
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3

Let’s practice! Type in the chat box:
How many years of experience do you
have living with IBD and/or caring for
someone with IBD?
5

Please respond to poll
question #1

(Virtual) parties are…
• An opportunity to celebrate
• 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 feel like you are part of the success of the
community whether you are a new or experienced
member—we all have a lot to celebrate and all have a role
to play
You willbe 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 willhave one action item you can take in the next week
to become part of—or further build—the community
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At the end of the call I’ll ask you…
If your knowledge of the ImproveCareNow
Community increased as part of this call
If you have a better sense of opportunities to
get in involved as a result of this call
If you heard about something with which you
might like to get involved
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ImproveCareNow Network
Currently 92 centers have joined ImproveCareNow, including 89 centers in 36 states and the
District of Columbia, two in England and one in Qatar. These 92 centers have 795 pediatric
gastroenterologists and 26,000 patients with IBD.

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.
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From Network to Community…
17

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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So Many Reasons to Celebrate in
ImproveCareNow
More kids in remission doing the things they want to do
National recognition for innovation and collaboration
New opportunities to discover new knowledge together
Reaching outside clinic walls: shining a light on psychosocial issues
A special place to connect
Behind the scenes heroes getting things done
A vibrant, growingparent and patient partner community
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More kids in remission
doing the things they
want to do
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Clinical remission rate in CD and UC
PGA = Inactive (Physician Global Assessment)
Centers >75% registered
81%
Apr
2007
Oct
2008
Aug
2010
Jul
2016
Aug
2012
Jun
2015

Centers with >80% clinical remission rate
PGA = Inactive (Physician Global Assessment)
55%
Centers registering patients >12 months
Jul
2007
May
2008
Nov
2013
Jul
2016

National recognition for
innovation and
collaboration
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Peter Drucker
Shortly before he died in 2005, Peter Drucker was
celebrated by BusinessWeek magazine as “the man
who invented management.” Naturally, when most
people hear that description, they think of
corporate management. And Drucker did, in fact,
advise a host of giant companies (along with
nonprofits and government agencies). But he came
to his life’s work not because he was interested in
business, per se. What drove him was trying to
create what he termed “a functioning society.”
25

Drucker Prize
The Drucker Prize (formerly the Drucker Award
for Nonprofit Innovation) is a $100,000 award
given to the nonprofit organization that is
deemed to best meet Drucker’s definition of
innovation: “change that creates a new
dimension of performance.” Now in its 25th
year, The Drucker Prize is the biggest nonprofit
management contest in America.
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Drucker Institute Announcement
“The ImproveCareNow Network exploited this
masterfully, by reframing health care from a
product delivered to patients to an activity that
patients, care providers and researchers co-
produce together. The ImproveCareNow
Network has demonstrated robust results, and a
rigorous commitment to continuous
improvement. We are delighted to recognize
them as the winner of the 2016 Drucker Prize.”
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New opportunities to
discover new
knowledge together
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Clinical Outcomes of Methotrexate Binary treatment with
INfliximab or adalimumab in practicE

A tremendous opportunity
To change thepractice of medicine in pediatric Crohn’s
disease
By addressing one of the most pressing clinical questions
To change theway we conduct research in pediatric
IBD (and perhaps other pediatric conditions)
Demonstrate the potential of ImproveCareNow, as a
prototype learning healthcare system, to implement a
randomized clinical trial
As an outgrowth of clinical care
Repurposing and expanding current organizational
structure, data collection, and other practices
Logical and inevitable next step in the ICN evolution

Framing the Clinical Question
Anti-TNF is the most effective treatment for
pediatric Crohn’s disease
Don’t work for every patient
Don’t work forever
Real safety concerns
Can combination therapy with a 2nd immune
suppressant improve response rate and
prolong duration of response?
With acceptable level of side effects

COMBINE
Pragmatic clinical trial to compare the effectiveness and safety of
anti-TNF monotherapy versus combination therapy with low
dose, oral methotrexate in children with Crohn’s disease
R
Low Dose MTX
Placebo
Week 104
Primary
• Induction and
maintenance of
remission
Secondary
• PRO
• Anti-TNF and
Antibody
• Safety
Data Collection
• Age < 21 years
• Diagnosed with
CD
• Starting on anti-
TNF biologic
• No
contraindication
to MTX

COMBINE
Was designed in response to the highest
priority research topic in pediatric IBD
Utilizes rigorous methodology to provide a
definitive answer that patients, parents, and
clinicians can trust
Will be the largest clinical trial ever done in
pediatric Crohn’s disease
Will be the first ImproveCareNow clinical trial
Entirely co-produced by parents, patients,
researchers, and clinicians

Parent/Patient Co-Production
Parents and Patients have been involved at every step:
Parents are members of the study team and provide
critical input into all aspects of study design and
execution
Parents lead the COMBINE Engagement Team which
also includes kids living with IBD (PAC)
Parents lead the development of all
recruitment/educational materials
At each participating site, we will need parent and
Patient champions who will help make the study
happen
Participating families will be a resource for families
considering enrolling into the trial

COMBINE has officially launched!
Initial wave of 29 ICN centers at varying stages
of start up
2nd round of site applications were due on
October 25th
First patient enrolled on October 18, 2016!
We still need 424 more participants over the
next 2 years.

Get involved!
ICN Center
Thanks to participating centers and recent applicants
Start recruiting as fast as possible so we can answer
this important question in a timely manner
Patient/Parent
At each participating site, we will need parent and
patient champions who will help make the study
happen
Participating families will be a resource for families
considering enrolling into the trial
Contact us if you want to learn how to be more
involved: http://www.improvecarenow.org/
contact-us

Research is creating new knowledge
Neil Armstrong

Testing the Specific Carbohydrate Diet
Using a Personalized (N-of-1) Approach
A new study from the ImproveCareNow Community
Shehzad Saeed, MD
Heather Kaplan, MD MSCE

>45 discussion threads on Smart Patients related
to the role of diet in managing IBD
Understanding the Role of Diet
in IBD was Identified as an
ICN Research Priority
“One of the most difficult things for me about my child getting a Crohn’s
diagnosis was that there seems to be so little attention given in the MD
community to how dietary changes might help. I’m not advocating
managing Crohn’s with food alone; but I can’t help feel that it is crazy to
focus only on giving medication and not worry about what she eats other
than ‘no popcorn or seeds’.”
-Mom on Smart Patients

94 clinicians and 116 parents/patients, identified
210 possible research questions which were
narrowed down by a stakeholder panel
164 contributors then ranked 22 topics, based on
what they believed would result in the greatest
improvement in health and well-being for pediatric
IBD patients
How effective is a low sugar and/or carbohydrate
diet (i.e. Specific Carbohydrate Diet) in reducing the
symptoms and disease markers of IBD?
Formal research prioritization
process that engaged
all stakeholders

Specific Carbohydrate Diet
Diet limits grains including wheat,
barley, corn and rice, sugar except
honey, and milk products except fully
fermented yoghurt
Preliminary data suggests the SCD may
improve symptoms and inflammatory
biomarkers
No data from controlled, large scale,
multi-center studies
No data comparing the SCD to a more
liberalized version of the diet (which
may be important because of the
challenge of maintaining the SCD)

Aim
To compare the effectiveness of the specific
carbohydrate diet (as compared to a more liberal
version of the diet) in reducing IBD symptoms and
inflammation
Provide personalized answers for each participant in
the study using an “N-of-1” approach
Provide answers for the entire community by
aggregating all of the individual “N-of-1” experiments
Use mobile phone technology to help patients and
families collaborate with their clinical team to
complete the N-of-1 studies

Next Steps
Study will kick off January 2017
First 6 months focused on planning, first patient enrolled
July 2017
What you can do to help…
Entire Community
Respond to the Study Naming Survey (which will be sent to
the ICN Listserv and emailed to all VHP attendees) to submit
ideas for a new study name and then vote on the top
contenders
Clinicians at ICN Sites
Attend Town Hall meetings in early January to learn about
the study in more detail and contribute to developing the
protocol
Complete a site selection application if you are interested in
being considered as a study site (anticipated in December-
January)

Key Members of the Team
Overall Study
Heather Kaplan, MD, MSCE
Lisa Opipari-Arrigan, PhD
Peter Margolis, MD, PhD
Sunny Thakkar
ICN Engagement Lead
Shehzad Saeed, MD
SCD Experts
David Suskind, MD
Kimberly Braly, RD
Parents and Patients
Gisele Woodward
Julie Stone
Sheri Pilley
Alex Jofreit

For More Information…
http://www.improvecarenow.org/contact-us

Reaching outside clinic
walls: shining a light on
psychosocial issues
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Fall 2016 ICN Virtual House Party
October 27, 2016
Psychosocial Professionals Group

Who are we?
52 social workers and psychologists at
ICN centers across the US and UK
Hard-working, creative, COLLABORATIVE
Enthusiastic about improving the
psychosocial health of children
and families with
IBD

Collaboration
Parent liaison
Margaux Barnes (Children’s of Alabama)
Laura Speegle (UCSF Benioff)
PAC liaison
Megan Drovetta(Children’s Mercy)
Alex Jofriet (Cincinnati Children’s)

Psychosocial screening
Screening toolkits in areas of psychosocial
functioning that are important in pediatric IBD
Targeted audience: Centers with fewer
psychosocial resources
First toolkit: Depression
Youth with IBD are at increased risk for depression
American Academy of Pediatrics recommends
depression screening annually

Psychosocial screening: Toolkit
 Screening questionnaire
 Staff training
 Scripts for staff
 Sample workflows
 Algorithms for scores
 Resources for the family
 Recommendations for documenting, billing
and tracking

Finding a Mental Health Provider
Rose Schroedl (Nationwide Children’s)
Megan Drovetta (Children’s Mercy)

School issues
Erin Pfeffer (Nemours Jacksonville) Marci Johnson (Nationwide Children’s)
Jill Layne (King’s Daughters) Megan Drovetta (Children’s Mercy)
Kristi Martin (Bon Secours)

School issues
The role your center plays
58%
42%
Education ≠ understanding

School issues
The role YOU play
Communication communication communication
communication communication communication

Future goals
Continue exploring psychosocial screening
Address unmet areas of need re: school issues
Continue working on projects to improve the
psychosocial health of children and families with
IBD

A special place to
connect—the ICN
Exchange
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Our Idea
Create a learning resource that will radically change for the better what people know
about how to implement an effective and reliable care delivery system to treat and
manage chronic disease beginning with pediatric inflammatory bowel disease
Our Beliefs
“Make it possible for a geographically dispersed community of clinicians, scientists,
patients, and parents to pool their knowledge, learn from each other and improve
outcomes.”
Our Challenge
“Once you open the
possibility that people are
not only using the web as
a platform … but to pool
their efforts, knowledge,
and resources … the
possibilities for what they
can create are astounding
(Benkler, 2001)."
Our Inspiration

“We are all on equal footing on the ICN Exchange—clinicians,
parents, and patients alike—and we all have a role in building
this commons.” -Sarah Myers
Learn from one
another
(Steal shamelessly)
Share tools and
resources
(Share seamlessly)
The ICN Exchange (community commons) Today
Just the facts
• Launched in April 2013 at the spring community conference – 46 care
centers & 170 users.
• September 2016 – 89 care centers, 960 users, 2500 resources, 498
average visits per month.

Behind the scenes
heroes getting things
done
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A vibrant, growing
parent and patient
partner community
69

Building the Future: The Patient
Perspective

71

Hi, I’m Natalie. I joined the PAC in July 2016!
As Communications Chair, I organize PAC schedule and
updates monthly and post regularly on @icnpatients
social media: Twitter, Instagram, Facebook and Snapchat
NEW! ICN Patients is on Facebook (like us!) & PAC
members are sharing real-life IBD experiences – like
injections or infusions - on Snapchat

My PAC Experience
• Being a part of the PAC has made me feel so
included and important in the IBD family.
• PAC members are super supportive and it makes
you realize how nice it is to interact with people
going through the same thing as you.
• PAC connects us with ICN members of every role
across the U.S.

PAC Communications
• Social media is a useful way for the PAC to communicate.
@icnpatients has connected with hundreds of clinicians,
parents, and patients. We share IBD-related struggles,
humor, educational materials, research & more. We also
raise awareness of important issues like psychosocial
health & IBD
• PAC members share their stories on LOOP – the official
blog of ImproveCareNow. Our posts are a way to get to
know us better. Our stories are engaging and inspiring to
read

PAC Community Conference
• I went to the Fall Conference in Chicago where I
attended and lead conference sessions. I live-
tweeted educational information and quotes from
doctors, parents, and patients
• I felt as though my opinion was cherished as much
as the clinician’s next to me
• I interacted with many parents and shared my
personal experiences with IBD and advice
• I participated in a role-play session highlighting a
missed opportunity of a physician bringing up ICN

General PAC
• I communicate with Sarah Nocito and Sarah Myers to
organize LOOP posts and PAC updates
• I help recruit new PAC members
• I organize monthly LOOP posts from PAC members
and facilitate edits
• I participate in monthly PAC calls & add new guest
speakers (contact Alex if you’re interested)
• DYK: PAC has a groupme where we chat almost every
day about our struggles and receive support and of
course funny replies!

Improving Care at My Center
• An important part of ImproveCareNow is the
diversity each individual center adds to the melting
pot
• Without their local centers many of the patients in
the PAC would not be involved in advocacy
• Patients are influenced by their centers and grow
and thrive because of this
• I am proud of the center I come from and excited
for the opportunities I have had to partner with
them and make changes

My Local Involvement
• At Cincinnati Children’s:
• I have helped develop a mentoring program
• I have helped run patient networking events
• I have helped at IBD education day
Through helping the Cincinnati Children’s
team, I have shaped my involvement, grown
my patient network and focused my IBD
advocacy work

PAC Involvement
• I have been involved with the
PAC since the beginning (in
2011) and have watched us
grow from a Facebook group
to a diverse council of
advocates and improvers
• The PAC story is really only
just beginning…

What I Have Learned From Being
An Advocate
• By getting to know others with IBD, I have learned
new strategies for improving my health; gained a
dependable support system; and found ways to
channel my energy to help others
• I truly believe that getting involved at my local
center and as part of the network-wide PAC has
benefitted my health

One Member and Tool at a Time
0
5
10
15
20
25
30
October2011
February2012
June2012
October2012
February2013
June2013
October2013
February2014
June2014
October2014
February2015
June2015
October2015
February2016
June2016
#ofmembers
Month and Year
PAC Membership 2011 to Present
Number of members

We Want You to Connect with the
PAC
• Connect on social media: @ICNpatients
• Message with us on social media too – we love to
interact with anyone interested!
• Clinical Care Providers: Share our infographic to
raise awareness (in new patient folder?)
• Parents: Discuss the PAC as a way to give & receive
support. Whether they join or connect on social
media patients will benefit from not feeling alone
• Email the PAC w any questions/comments, or to get
involved: pac@improvecarenow.org

Helping us Grow: The Parent
Perspective

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Parent Working Group
Deb Ostiguy - Baystate Medical Center- Massachusetts
Parent Leader –Parent Advisory Council- Pediatric
Gastroentrology
• I am a Crohn’s patient since 1984
• I have a older brother with Crohn’s
• I have a 19 year old son who was diagnosed at 11 years old
with Crohn’s
• I have been to 4 community conferences
• On a mission to help find cure, if not in my lifetime….as
least in my son’s.
• Currently on Leadership Council for ImproveCareNow
Parent Working Group in the role of Communications
86

Parent Accomplishments at Baystate Medical Center
• Helped develop a transitional booklet for pediatric patients
heading into adult care.
• Working with architects and staff to have a say and input about
the design of new pediatric procedural unit.
• I also attend clinician ImproveCareNow monthly meetings as a
parent advisor
• We hold monthly meetings with the other parents to brainstorm
ideas to improve care…i,e. , subjects include “How to make the
most of your appointment”… “Navigating school issues and 504
plans”…. “Smart Patients website and navigating ICN exchange.”
• This is a parent driven group with clinicians occasionally stepping
in as guest speakers.

We could sit around and hope that something happens
or become involved and hopefully make something
happen. We are the cure waiting for the Cure!

From National to Local to Individual:
Finding your community
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• It’s all right here on the
homepage!
• Care Centers
• Tools
• Social Media
• Network Hub (portal,
exchange, registry)
• Events & Opportunities
(more to come!)
• Sign up for CIRCLE right on
the homepage!
ImproveCareNow.org

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• The official blog of
ImproveCareNow and home of
#myICN stories – LOOP - is
integrated into our website,
making it super easy to read
and share stories.
• Sign up to follow LOOP and
receive new posts in your inbox
• Comment using Disqus
• www.improvecarenow.org/loop
LOOP

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• Find and connect with the
people & opportunities that
matter most to you!
• Join our CIRCLE and connect with
the PAC & PWG
• Researchers are invited
to submit a proposal to the
Research Committee
www.improvecarenow.org/get_involved
Get Involved

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Other Resources
ImproveCareNow Projects
Keep up to date with a listing of current research and quality
improvement projects (includes links to resources)
www.improvecarenow.org/improvecarenow-projects
Care Centers (Interactive Map)
locate, learn more about & connect with ICN Centers
www.improvecarenow.org/care-centers
Tools
A library of co-produced IBD tools to improve care for kids with IBD,
including: Smart Patients sign up, Ostomy Toolkit, Self-Management
Handbook, and more
www.improvecarenow.org/tools
Our Success Infographic & Control Charts
www.improvecarenow.org/purpose-success/#success
www.improvecarenow.org/purpose-success/#control-charts

Learn how to talk about
ImproveCareNow!
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What can you do today? By next Tuesday?
Connect with ImproveCareNow
• Choose the platform that’s right for you and
connect—www.improvecarenow.org
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?
http://www.improvecarenow.org/contact-us
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Our Learning Health Community: So Much to Celebrate!

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