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!

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already counted in 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.

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(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

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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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(insert updated ICN map)

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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.

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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.

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Spring 2007

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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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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 CouncilPartner within your local centerUse Smart Patients as a peer-to-peer communityJoin a research team or submit a research idea to the ImproveCareNow Research CommitteeShare your storyIf you’re working outside of IBD care, learn with us and apply these ideas to your communityStay connected!

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From National to Local to Individual: Finding your community

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Building our Core: Partnership at the National Level

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ImproveCareNow from the Patient Advisory Council Perspective

Alex Jofriet

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What is ImproveCareNow?

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

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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 SiedlaczekDiagnosis: Crohn’s ICN Center/Hospitals: C.S. Mott Children’s Hospital

Victoria Edwards Diagnosis: Crohn’sICN Center/Hospitals: Pediatric Specialists of Virginia

Tyler MoonDiagnosis: Crohn’sICN Center/Hospitals: Nationwide and St. Louis Children’s

Christian HansonDiagnosis: Crohn’sICN Center/Hospital: Boy’s Towns National Research Hospital

Why Does it Matter?

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What is our structure?

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What does our impact look like?

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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

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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

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What are some other things you can do?

Check out our social media @ICNPatientsListen in on a PAC call

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Virtual House Party

Parents’ Perspective

Kim Fracchia, Lebonheur Children's Medical Center, Memphis, TN

Keri GoldbergThe 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.

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Parker’s Journey: Age 9, Crohn’s DiseaseMy name is Keri Goldberg, I am with The University of Vermont Children’s Hospital, in Burlington, VermontIN 2014, At age 7: Parker was diagnosed with Crohn’s DiseaseHis road to diagnosisHis 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 leadMy 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!

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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

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The Coordinator Role

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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: MassGeneral Hospital for Children

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MassGeneral Hospital for ChildrenLocated in Boston, MA with 13 satellite centers in MA, NH, and METarget pediatric IBD population of ~700Part of ICN since 2009Large Pedi GI staff

23 attending physicians4 core ICN providers3 nurse practitioners4 outpatient nurses6 fellows7 clinical research coordinators (1 ICN coordinator)4 dieticians

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MassGeneral Hospital for Children…and no parent partners…

…until January 2016!

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MassGeneral Hospital for ChildrenWhy did we decide to get involved now?

Knew we had parents who wanted to be involvedWanted to know how parents wanted to be involvedWanted to shift the dynamic towards equal collaboration between provider and patient/familyWanted family feedback on several specific ideas

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MassGeneral Hospital for ChildrenWhat 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: MassGeneral Hospital for ChildrenPediatric Gastroenterology & Nutrition”

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MassGeneral Hospital for ChildrenParent Engagement Event – 1/31/16

18 parents (representing 15 patients); 4 physicians, 1 research coordinator, 1 nurseAgenda

Overview of IBD CenterOverview of ICNBreakout exercise (“Through the Eyes of the Parent”)DinnerIntroduction to co-productionICN PAC and PWGParent Feedback Survey

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MassGeneral Hospital for ChildrenParent Feedback Survey

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MassGeneral Hospital for ChildrenTakeaways

Parents appreciated the chance to be involvedAnd they want to get more involved!

7 parents were interested in attending ICN CCBrought 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!56

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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Joining a research team

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Staying Connected via Social Media

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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

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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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?

Questions?

info@improvecarenow.org

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