Improving Care in a Learning Health Care System

Richard B. Colletti, MDVice Chair for Clinical and Research Affairs

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Overview

Reliability in health careApplication of the Model for Improvement to pediatric IBDImproveCareNow

Improving care and outcomes for children with Crohn’s disease and ulcerative colitisCollaborative Chronic Care Network (C3N)Learning Health Care System

How I did I get to Vancouver?

What was the probability…

that my plane would crash?1 in 1,000,000 (failure rate)Reliability rate: 99.9999%that my bag would not arrive?1 in 100 (failure rate)Reliability rate: 99%that my plane would arrive late?1 in 10 or worse (failure rate)Reliability rate: 90%

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What is the reliability of medical care?

Patients receive only 60% of recommended carePatients take only 60% of recommended medicationsThere is a gap between recommended care and the care actually carried outIf medical care and patient self-management were more reliable, would outcomes be better?

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Remission rate

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Centers with >75% enrolled % of patients by disease status

77%

18%

5%

••Inactive•• ••Mild•• ••Moderate-Severe••

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How we improve care and outcomes

1. Establish Aims and MeasuresWhat are we trying to accomplish?How would we know if a change is an improvement?

2. Measure performance 3. Identify gaps between standard and actual

performance4. Make changes to close the gaps using tools to

increase reliability

Practice Guideline

46 Pediatric GI Centers

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14,200 IBD patients46 centers

425 Ped GI

30%

How many patients in the registry?

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45,000 visits

8,700 enrolled

Largest and fastestgrowing in the world

A gold mine of datafor learning

Data collection and entry

Enroll every patient with inflammatory bowel disease

Enter data for every outpatient visit

50 to 75 data elements each visitManual web-based data entry into registry

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9 process measures: Classification bundle

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5 classifications: disease severity, extent, phenotype; nutrition & growth

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6 outcome measures:Remission rate

2007 2008 2009 2010 2011

R.Colletti 2009

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)

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Plan

DoStudy

Act

Patient visit

Data collection

Data entry

Data storage

Data analysis

Reportsto sites

Reportanalysis

Plan and carry outchanges

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March 2012

Netw ork Target

> 75% Pts. Enrolled Teams'

Performance

Team's 90-Day Goal

Team's Performance March 2012

1. Remission Rate 80% 76% 78%

2. Steroid free remission rate 76% 73% 77%

3. Sustained remission rate 45% 56% 64%

4. % of patients off prednisone 95% 92% 92%

5. % of patients w ith satisfactory nutritional status 90% 90% 95%

6. % of patients w ith satisfactory grow th status 90% 90% 93%

7. % of patient visits w ith complete classif ication bundle 95% 95% 100%

8. % of patients w ith a documented visit w ithin the last 6 months 80% 76% 72%

9.% of visits starting treatment w ith a thiopurine w ho have had measurement of TPMT (3-month moving average)

90% 78% 100%

10. % of patients w ith thiopurine dose prescribed according to Model Care 80% 78% 63%

11.% of visits at w hich 6-TGN level is measured according to Model Care (3-month moving average)

75% 40% 100%

12.% of visits at w hich patient had initiation dose of inf liximab and had prior PPD or chest X-ray (3-month moving average)

95% 73% 0%

13. % of patients w here the dose of inf liximab is given according to Model Care 95% 96% 100%

14.% of visits w here the inf liximab trough level of patients treated w ith inf liximab is measured according to Model Care (3-month moving average)

75% 54% 100%

15.% of patients treated w ith methotrexate w here the dose is at least 10 mg/square-meter per w eek

95% 90% 100%

The mission of the ImproveCareNow Network is to develop and test specific changes that will lead to improvement in the care of children with pediatric IBD and determine how best to incorporate these improvements into everyday practice.

Key Measure

Clinical Remission

Adequate Nutrition and Growth

Model Classification

Key Measures

Vermont Childrens Hospital

Model Treatment

MONTHLY KEY MEASURES REPORT

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10. Thiopurine dose according to Model Care

(75%, 80%, n=509)

3. Sustained remission rate

(57%, 45%, n=1352)

1. Remission rate(76%, 80%, n=2435)

Key MeasuresMonthly Report – December 2011

Advanced TrackAll Sites Performance

8. Documented visit in last 6 months

(79%, 80%, n=3031)

2. Steroid free remission rate

(72%, 76%, n=2424)

9. Starting thiopurine and TPMT measured

(67%, 90%, n=6)

(score, goal, n)

7.Complete documentation bundle

(94%, 95%, n=502)

15.Methotrexate dose >= 10 mg/square-meter/w eek

(91%, 95%, n=65)

14. Inf liximab trough level measured

(55%, 75%, n=11)

6. Satisfactory grow th status

(93%, 90%, n=1851)

13. Inf liximab dose according to Model Care

(95%, 95%, n=535)

4. Off prednisone(91%, 95%, n=2542)

11. 6-TGN level measured according to Model Care

(17%, 75%, n=12)

5. Satisfactory nutritional status

(90%, 90%, n=2615)

12. Inf liximab initiation and prior PPD or chest X-ray

3-month moving average(79%, 95%, n=34)

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MONTHLY KEY MEASURES REPORT

18Control charts and Exceptions Report

MONTHLY DATA QUALITY REPORT

March 2012

Netw ork's Performance

Center's Performance

Netw ork Target

1. Proportion of population enrolled AND active in registry

2. Proportion of patients enrolled w ithin 90 days of diagnosis 36% 80%

3. Proportion of actual visits recorded in registry 85%

4. Proportion of visits w ith all critical data recorded 89% 91% 95%

5. Proportion of visits w ith height, w eight, and BMI Z-scores betw een -3 and +3 96% 94% 99%

6.Proportion of visits w here PGA is w ithin 1 category of appropriate activity index 96% 100% 95%

7. Proportion of visits w here height is no more than 1 cm below prior value 94% 96% 99%

8. Proportion of visits w ithout an impossible change in phenotype/extent 92% 91%

9. Proportion of visits entered w ithin 30 days of visit date *** 84% 100% 90%

10. Proportion of active patients in registry w ith visit recorded in last 13 months 95% 84%

Data Monthly Report

Key Measure

Data Quality Measures

Communicate & Collaborate

R.Colletti 2004 19

2007

Communications

ListservImproveCareNow Portal (on-line resource center)www.ImproveCareNow.orgWeekly DigesteNewsletter: CircleBlog: LoopeNewsletter for practitioners: ScopeFacebook, Twitter, YouTube

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Interventions

Registry enrollment and data qualityModel IBD Care guidelinePopulation management

Care stratification

Pre-visit planningSelf-management support

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Vermont Childrens1/17/2012

Patients by Diagnosis Patients by RacePrimary Provider (All) Primary Provider (All)

Data DataDX #Patients % Patients Race #Patients % PatientsCrohn's 62 70% White 74 84%UC 24 27% AfricanAmerican 1 1%IndColitis 2 2% Unknown 13 15%(blank) 0% (blank) 0%Grand Total 88 100% Grand Total 88 100%

Patients by Age Group Primary Provider (All) Primary Provider (All)Primary Provider (All)

DX Data DX DataData Crohn's UC

Age Group #Patients % Patients Age Group #Patients % Patients Age Group #Patients % Patients6-10 2 2% 6-10 1 2% 6-10 1 4%11-14 17 19% 11-14 13 21% 11-14 2 8%15-17 30 34% 15-17 19 31% 15-17 11 46%>17 39 44% >17 29 47% >17 10 42%(blank) 0% Grand Total 62 100% Grand Total 24 100%Grand Total 88 100%

Patients by Gender Primary Provider (All) Primary Provider (All)Primary Provider (All)

DX Data DX DataData Crohn's UC

Gen #Patients % Patients Gen #Patients % Patients Gen #Patients % PatientsF 46 52% F 30 48% F 15 63%M 42 48% M 32 52% M 9 38%(blank) 0% Grand Total 62 100% Grand Total 24 100%Grand Total 88 100%

Population Management Report as of:

TWICE-MONTHLY POPULATION MANAGEMENT REPORT

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TWICE-MONTHLY POPULATION MANAGEMENT REPORT

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Population management: care stratification

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Risk Name Score Overall Score

PGA-Moderate MK 3 6Prednisone MK 3 6PGA-Moderate WB 3 6Nutrition-Failure WB 3 6PGA-Mild WJ 1 5Prednisone WJ 3 5Growth-At Risk WJ 1 5PGA-Mild WV 1 5Nutrition-At Risk WV 1 5Growth-Failure WV 3 5PGA-Mild DM 1 4Prednisone DM 3 4Prednisone LA 3 4Nutrition-At Risk LA 1 4PGA-Moderate BS 3 3Growth-Failure NA 3 3Prednisone VS 3 3PGA-Mild BB 1 1PGA-Mild MB 1 1PGA-Mild MD 1 1PGA-Mild PM 1 1PGA-Mild RJ 1 1PGA-Mild TE 1 1

COMING SOON: AUTOMATED POPULATION MANAGEMENT & CARE STRATIFICATION

PRE-VISIT PLANNING

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COMING SOON: AUTOMATED PRE-VISIT PLANNING

ImproveCareNow Current State: Data Recorded Three Times

Encounter Abstraction Data Entry

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ImproveCareNow Coming Soon:Data-in-Once, Files Uploaded

Structured data is extracted

from the EHR

Data is uploaded to the

ImproveCareNow database

AnalysisQI

CER

Encounter

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C3N Project Collaborative Chronic Care Networks

NIH TR01 grantTransform ImproveCareNow into a C3N

Join patients, parents, clinicians and researchers in a shared collaborative networkImprove clinical practice, patient self-management, and disease outcomes

Innovative prototypesYouMeIBD.com, Passive PRO app, mentoring program, N of 1 Trials with PRO app, Peer Produced Practice Knowledge, mobile social gamesPatient Advisory Council, Parent Working Group, Building Community Leadership, patient platform: create a patient- and family-centered network

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Learning Healthcare System

“Designed to generate and apply the best evidence for the collaborative choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care”

Learning Health Care System

1. Community2. Focus on the outcome3. Data-in-once4. Quality improvement5. Comparative effectiveness6. Governance

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Using data for research as well as QI: Simulated trial

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Outcomes ImproveCareNow n=96; REACH n=112

NS

NS

Simulated trial with control group

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The value equation

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Value = outcomes cost

Purpose of ImproveCareNow

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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September 2012

https://improvecarenow.org/joinus