Follow along on: #myicn

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?

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Let’s practice! Type in the chat box:

How many years of experience do youhave living with IBD and/or caring for

someone with IBD?

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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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(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 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

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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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We improve.

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We connect.

We believe…

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We grow.

From Network to Community…

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From Network to Community

Communities have storiesCommunities growCommunities are made up of smaller communitiesCommunities learn togetherCommunities 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, growing parent and patient partner community

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More kids in remissiondoing the things they want to do

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Clinical remission rate in CD and UCPGA = Inactive (Physician Global Assessment)

Centers >75% registered

81%

Apr 2007

Oct2008

Aug2010

Jul2016

Aug2012

Jun2015

Centers with >80% clinical remission ratePGA = Inactive (Physician Global Assessment)

55%

Centers registering patients >12 months

Jul 2007

May2008

Nov2013

Jul2016

National recognition for innovation and collaboration

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(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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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.”

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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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(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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Clinical Outcomes of Methotrexate Binary treatment withINfliximab or adalimumab in practicE

A tremendous opportunityTo change the practice of medicine in pediatric Crohn’s disease

By addressing one of the most pressing clinical questionsTo change the way 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 trialAs an outgrowth of clinical careRepurposing and expanding current organizational structure, data collection, and other practicesLogical 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 patientDon’t work foreverReal safety concerns

Can combination therapy with a 2nd immune suppressant improve response rate and prolong duration of response?

With acceptable level of side effects

COMBINEPragmatic 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 104Primary• 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 IBDUtilizes rigorous methodology to provide a definitive answer that patients, parents, and clinicians can trustWill be the largest clinical trial ever done in pediatric Crohn’s diseaseWill be the first ImproveCareNow clinical trialEntirely co-produced by parents, patients, researchers, and clinicians

Parent/Patient Co-ProductionParents 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 executionParents lead the COMBINE Engagement Team which also includes kids living with IBD (PAC)Parents lead the development of all recruitment/educational materialsAt 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 up2nd 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 applicantsStart recruiting as fast as possible so we can answer this important question in a timely manner

Patient/ParentAt 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 trialContact 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, MDHeather 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 thesymptoms 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 yoghurtPreliminary data suggests the SCD may improve symptoms and inflammatory biomarkersNo data from controlled, large scale, multi-center studiesNo data comparing the SCD to a more liberalized version of the diet (which may be important because of the challenge of maintaining the SCD)

AimTo 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 StepsStudy 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 SitesAttend Town Hall meetings in early January to learn about the study in more detail and contribute to developing the protocolComplete 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 StudyHeather Kaplan, MD, MSCELisa Opipari-Arrigan, PhDPeter Margolis, MD, PhDSunny Thakkar

ICN Engagement LeadShehzad Saeed, MD

SCD ExpertsDavid Suskind, MDKimberly Braly, RD

Parents and PatientsGisele Woodward

Julie StoneSheri PilleyAlex Jofreit

For More Information…

http://www.improvecarenow.org/contact-us

Reaching outside clinic walls: shining a light on psychosocial issues

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(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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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 UKHard-working, creative, COLLABORATIVEEnthusiastic about improving the psychosocial health of children and families with IBD

Collaboration

Parent liaisonMargaux Barnes (Children’s of Alabama)Laura Speegle (UCSF Benioff)

PAC liaisonMegan Drovetta (Children’s Mercy)Alex Jofriet (Cincinnati Children’s)

Optimal Psychosocial Health

Psychosocial screening

Screening toolkits in areas of psychosocial functioning that are important in pediatric IBD Targeted audience: Centers with fewer psychosocial resourcesFirst toolkit: Depression

Youth with IBD are at increased risk for depressionAmerican 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 playCommunication communication communication communication communication communication communication communication communication communication communication communication communication communication communicationcommunication communication communicationcommunication communication communication

Future goals

Continue exploring psychosocial screeningAddress unmet areas of need re: school issuesContinue 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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(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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Our IdeaCreate 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 thepossibility that people arenot only using the web asa platform … but to pooltheir efforts, knowledge,and resources … thepossibilities for what theycan create are astounding(Benkler, 2001)."

Our Inspiration

http://www.icnexchange.org/

“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) TodayJust 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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(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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A vibrant, growing parent and patient partner community

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Building the Future: The Patient Perspective

(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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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 SnapchatNEW! 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

We Are Making A Difference

One Member and Tool at a Time

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# of

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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

(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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Parent Working GroupDeb Ostiguy - Baystate Medical Center- MassachusettsParent 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

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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 Centerswww.improvecarenow.org/care-centers

ToolsA 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 Chartswww.improvecarenow.org/purpose-success/#successwww.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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