Peter Margolis, MD, PhDJames M Anderson Center for Health Systems Excellence

Cincinnati Children’s Hospital Medical Center

Supported by NIH NIDDK R01DK085719

AHRQ R01HS020024 AHRQ U18HS016957

Improving

Child

Health

Health care

delivery

Basic

research

Translational

Research

Clinical

Trials

Outcomes

Research

Aim: Integrate new knowledge into health care delivery system

John Bucuvalas, MD

Cincinnati Children’s

.5 x .5 = .25

3

Learning Health Systems

• 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

Institute of Medicine

What if it was as easy to find out how to create a registry in a practice or find a medicine that’s right for you as………..

……it is to order exactly the book you want?

What if….?

• …we could create a vastly better chronic care system

by harnessing inherent motivation and collective

intelligence of patients and clinicians?

• … this system allowed patients and physicians to

share information, collaborate to solve problems, use

their collective creativity and expertise to act in ways

that improve health?

Percent of Patients in Remission

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Jul-2007 N

=338

Aug-2

007 N

=396

Sep-2

007 N

=428

Oct-

2007 N

=479

Nov-2

007 N

=508

Dec-2

007 N

=531

Jan-2

008 N

=570

Fe

b-2

008 N

=607

Mar-

2008 N

=643

Apr-

2008 N

=654

May-2

008 N

=667

Jun-2

008 N

=671

Jul-2008 N

=686

Aug-2

008 N

=731

Sep-2

008 N

=754

Oct-

2008 N

=801

Nov-2

008 N

=832

Dec-2

008 N

=901

Jan-2

009 N

=973

Fe

b-2

009 N

=995

Mar-

2009 N

=1021

Apr-

2009 N

=1070

May-2

009 N

=1112

Jun-2

009 N

=1194

Jul-

2009 N

=1240

Aug-2

009 N

=1277

Sep-2

009 N

=1314

Oct-

2009 N

=1344

Nov-2

009 N

=1366

Dec-2

009 N

=1400

Jan-2

010 N

=1421

Fe

b-2

010 N

=1410

Mar-

2010 N

=1440

Apr-

2010 N

=1455

May-2

010 N

=1461

Jun-2

010 N

=1471

Jul-

2010 N

=1489

Aug-2

010 N

=1518

Sep-2

010 N

=1547

Oct-

2010 N

=1576

Nov-2

010 N

=1985

Dec-2

010 N

=2032

Jan-2

011 N

=2043

Fe

b-2

011 N

=2065

Mar-

2011 N

=2124

Apr-

2011 N

=2191

May-2

011 N

=2206

Jun-2

011 N

=2272

Jul-

2011 N

=2301

Aug-2

011 N

=2335

Pe

rce

nt

of

Pat

ien

ts

Month

Percent of IBD Patients in Remission (PGA)

Why Crohn’s as a Prototype?

• Number of patients small

• Few incentives for industry to invest in research

• No center has enough patients

• Teenagers especially likely to use Internet

communications

NIH Roadmap Transformative Research Program“projects that have the potential to transform a field of science”

Apache Web Server Market Share

Open Sharing in Science

Creating Conditions for a C3N

1. Align motivation around common vision

2. Make it easy to contribute

– design, system engineering and technology

3. Enable better communication

4. Decrease time, effort and money to participate

Building Community

• Compelling purpose

• Core leadership team – patients, clinicians, researchers

• Sharing stories

http://creativecommons.org/licenses/by-nc-sa/3.0/

Overcome transactional costs- time, effort and money -

17

Reducing Transactional Costs Example: Data Collection

“Data-In-Once” EMR linked to i2b2 Data Warehouse

Infliximab and Thiopurine Treatment by Site

0%

10%

20%

30%

40%

50%

60%

70%

Sites

Perc

en

tag

e o

f C

D P

ati

en

ts

Infliximab Thiopurine

“Enhanced” Registry - Research

“Enhanced” Registry

• Research using distributed registry of 10,000 patients

• Automated Pre-visit Prompts

• Automated Physician Pre-Visit Planning

12. Growth status is classified

(100%, 90%, n=29)

Number of

patients

enrolled in

Clinipace

(cumulative)

17. Appropriate doses of

Sulfasalazine and/or

Mesalamine

(83%, 85%, n=6)

18. Started on a 6MP

or azathioprine

. . . pre-tested for TPMT level

(100%, 90%, n=3)

11. Satisfactory growth status

(99%, 88%, n=89)

3. Disease severity is

documented

(100%, 90%, n=29)

6. Nutritional status is classified

(100%, 90%, n=29)

2. Disease phenotype and extent

of disease are documented

(100%, 90%, n=29)

4. Height, weight and BMI

are plotted

(96%, 90%, n=25)

5. Satisfactory nutritional status

(97%, 89%, n=89)

1. Complete diagnostic and

initial evaluation

(100%, 90%, n=1)

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0

20

40

60

80

100

04/0

7

06/0

7

08/0

7

10/0

7

12/0

7

02/0

8

04/0

8

06/0

8

08/0

8

10/0

8

*

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

0%

20%

40%

60%

80%

100%

Quality Improvement Reports

24

0

1

2

3

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Probiotic Daily Doses

0

1

2

3

4

5

9/…

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Rush to Bathroom

0

1

2

3

4

5

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Total Stools

0

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5

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Loose Stools

Self-Experimentation - Probiotics

ImproveCareNow “Commons”Making Sharing Easier

• Resources that patients, physicians, and researchers “own” must be available for sharing to drive learning

• Data, text and tools, software

• Incentives and disincentives influence likelihood of sharing (e.g., making a difference, recognition, promotion, getting “scooped”)

Why use a “Commons”?

If you have a philosophy of sharing…

1. There is a need to implement that sharing in law, technology, and professional norms.

2. The digital commons is a well established method for collaborative, legal sharing.

If you want to share, building a new sharing method is…

1. Expensive

2. Non-interoperable with other sharing methods

3. Unlikely to scale

4. Unlikely to connect to other user communities

Why use pre-existing tools?

• Federated IRB

• Data sharing policy

• Standardized approach to intellectual property

– “opt out”

28

ImproveCareNow Commons

Creating Conditions for a C3N

1. Align motivation around common vision

2. Make it easy to contribute

– design, system engineering and technology

3. Enable better communication

4. Reduce “transactional” costs

What is the C3N?

• Self-reinforcing network

• “Lab” and “proving ground”

• A social, technical and scientific platform to support a learning health system

http://www.c3nproject.org

Contact us

Join the movement www.c3nproject.org

info@c3nproject.org

C3N | Collaborative Chronic Care Network

@C3NProject

Design Prototype

We adhere to a design process

Pilot Implement

What is a Federated IRB?• CTSA-led initiative towards centralized review

– Pilot using National Children’s Study– Goal: Maintain standards, remove duplicative effort– ICN goal: Reduce burden on ICN physicians + staff

• Provides mechanism to:– Review the same IRB Protocol across multiple sites– Share information across all site IRBs– Streamline local IRB review by allowing CCHMC IRB to serve as

the IRB of Record (if desired)

• IRB related activities are supported and coordinated by the Federation of IRB Operations Center (IRB Ops Center)

Identify User Goals

• Ethnographic Research

• Create “Personas”

Bianca Simmons, Age 20• “What does not kill you makes you stronger”• With her ostomy bag discretely tucked into

her jeans, Bianca makes her way around the Clearstone University campus in style.

• She’s been on and off all of the steroids and other medications because either they weren’t working or, like Humira and the elemental diet, they simply didn’t suit her lifestyle.

• So, when she had surgery, it was a big relief. She thinks she will have the bag for a while especially since her boyfriend doesn’t seem to mind it.

• She’s a CCFA camp counselor in the summers, keeps in touch with her campers throughout the year, and participates in CCFA events whenever she can. Last month, she and a friend raised nearly a thousand dollars for CCFA camp scholarships.

Goals

• Keep symptoms at bay

• Be a leader in the IBD community

Diverge generate

ideas

Ethnographic

Research

Spawn a COIN

Convergemake

choiceswww.c3nproject.org

This presentation is made available under a creative commons non-commercial, attribution, share-alike arrangement (which means people are free to share the content so long as they acknowledge the C3N project when doing so). That's what the creative commons license on the slide means.