Leading Quality Improvements in Pediatric Rheumatology Care A Learning Network Approach.

Leading Quality Improvements in Pediatric Rheumatology Care

A Learning Network Approach

Movement Toward Learning Networks

Are all children with JIA receiving the best care possible according to recommended guidelines?

Are pediatric rheumatologists working in systems that allow us to do the best by our patients?

Are patients and families getting all the information they need to understand JIA, make decisions about treatments, and effectively care for their child at home?

Are JIA Patients Achieving Desired Outcomes?

Research is Not Quickly Implemented

Research IS important but application lags

Average of 17 years for new evidence-based findings to reach clinical practice1

People talking to people is how norms and standards quickly change 2

What is needed are systems and a cultures where doing the right thing is what people do, day in and day out, even when no one is watching 2

1. http://www.ihi.org/resources/Pages/Publications/Managingclinicalknowledgeforhealthcareimprovement.aspx

2. http://www.newyorker.com/magazine/2013/07/29/slow-ideas

Healthcare Improvement

Needs a QI System • In current U.S healthcare system, patients often receive less than half of clinically indicated standard of care http://www.iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx).

• Improvement research requires a large base of data and instances to test improvement tools.

• Limitations - small numbers of pediatric patients at each clinic site.

Learning Networks Movement to Address

Needs• Multi-site, practice-based clinical networks.

• Combine engaged patients and families, multidisciplinary clinicians and staff, researchers and communities.

• By combining patients and practices across a Learning Network, improvement is enhanced and accelerated.*

• Provides foundation for QI research, testing and implementation.

Sample Learning Networks – Big and

Small• American Board of Pediatrics (ABP)

• Agency Healthcare Research and Quality (AHRQ)

• Patient-Centered Outcomes Research Institute (PCORI) is acclaimed for engaging patients and clinicians to improve health outcomes

• PR-COIN is 1of 9 Learning Networks coordinated by the Anderson Center of Health Systems Excellence at Cincinnati Children’s Hospital Medical Center.

QI systems are needed to support improvement

*http://www.cincinnatichildrens.org/service/j/anderson-center/learning-networks/default/

“It takes an average of 17 years for new knowledge generated by randomized controlled trails to be incorporated into practice, and even then application is highly uneven.“ Institute of Medicine reports (2001)

The Case for a JIA Learning Network

JIA:

• Chronic childhood painful, inflammatory joint condition

• Affects 1:1000 children• Can lead to long term

disability, pain and reduced quality of life

• Associated eye inflammation (uveitis) can cause vision loss

• Early diagnosis and proper treatment improves long term outcomes

Challenge:Variation• Variation exists in

treatment patterns by providers, medical centers and geographic locations

• Challenge: Patients are not reaching optimal outcomes (inactive disease, low pain score)

Opportunity: PR-COIN• Network of experts• Developed tools and

successful processes• Learning from peers

and share best practices

• Maintenance of Certification

• Outcomes:• Improve care• Increase family

engagement in process

PR-COIN Uses QI to Improve Care

Launched in 2011 as sustainable collaborative of pediatric rheumatologists with focus on quality improvement initiatives

16 Sites -2 Canada, 14 in US, and growing*

Over 2,260 unique patients registered in database and growing monthly*

*As of April 2015

International, quality improvement Learning Network working to improve care for children with Juvenile Idiopathic Arthritis

Learning Networks are Successful – ImproveCareNow example

Learning Network Success in Other Chronic Diseases

The successful Improve Care Now network is a stellar example of the power of learning networks. No new medications were introduced, yet by sharing insights, tools, documents and processes 66 teams standardized their site’s practice and reached 77% remission rates in 5 years. That is much better than the usual 17 years! There is power in collaborating.

Remission rate: 60% to 77%

66 Care Sites>500 physicians>15,000 patientsStandardized care

PR-COIN Structure, Approach and Achievements

PR-COIN teams learn from others, avoiding their mistakes and applying successful tools, concepts and practices to improve safe use of therapeutics and achieve improved outcomes.

QI Methods

Improve Inactive Disease RateReduce drug toxicity

Catch uveitis early and treat

Physical function measure

Toxicity Lab

monitoring

Uveitis Screening

Improved

Outcomes

Improved

Processes

Lead to

PR COIN Approach for Transforming Care Delivery in JIA Population

Proven QI methodolo

gy

Growing data

repository

Shared Tools

Tracking performance over time

Performance tracking of team

and network outcome and

process measures

10 sites submitting data

into Registry

1,850 unique patients in

database as of September 2014

IHIBreakthroug

h Series Model

QI tools to test small changes to

improve clinic

processes

Share best practices to reduce cost

& time

Shared Decision Making

Population Managemen

tPre-Visit Planning

Improved Care,

Processes and

Outcomes

A D

P

S

Percent of patients in remission on medications

for 6 months

0

20

40

60

80

100

PR-COIN Achievements: Examples of Statistically Significant Progress

As of October 2014

Percent of patients on DMARDs who had medication

counseling within the last 12 months

0

20

40

60

80

100

Parent Engagement Supports Improvement

Our Parent Working Group raises awareness about PR-COIN, advises and participates in network QI activities, and collaborates with local care teams by sharing insight about patient and family needs

Families representing 13 teams participate

The Facebook Group is growing and currently has 91 family members from across the nation

PR-COIN’s value is recognized through Grant Awards

PR-COIN and partners awarded PCORnet grant funded by PCORI (partners include the Arthritis Foundation, CARRA, Friends of CARRA and the Lupus Foundation)

STUDY ENDORSED BY

Independent Education Grant

Membership Benefits and Participation Expectations

Membership Benefits Maintenance of Certification credit (upon meeting

requirements) and serves as a quality improvement platform for Fellows

Monthly team and network level data reports Access to PR-COIN aggregate data for approved research

projects (teams also have access to their submitted data) Training in Quality Improvement methods and tools Quality Improvement consultation Twice yearly Learning Sessions and monthly informational

webinars Access to Member Only websites including use of the

Population Management Tool and Pre-Visit Planning Report PR-COIN materials, documents, presentations, and tools Web-based data submission Support with IRB and legal processes Your team is listed on public website

Benefits at Every Institutional Level

- Improve patient outcomes and engagement - Access to QI

tools and broad network of peers- Maintenance of Certification Part

IV - Learn best

practices

- Recognized as a leader in improving health care- Increased visibility and branding potential as members of international collaborative for outcomes excellence

- Exemplar for other divisional

QI efforts- Join a growing

international network of recognized institutions- Receive QI

initiative support aligned with

organizational priorities

Benefits to Pediatrics Department

Benefits to Our EntireOrganization

Benefits toRheumatology Division

Participation Expectations

Attendance at two Learning Session Conferences/year and at monthly informational webinars

Active conduct and reporting of local improvement activities to improve clinic processes and care by applying improvement science concepts and tools

Resources to test process improvements, manage data entry, and human subjects requirements (IRB, patient consent and legal agreements)

Annual site participation fee (fiscal year July – June)

Contact PR-COIN for additional details

PR-COIN SPONSORS (all)

An Anonymous Family Foundation

CCRF Place Outcomes Award

STUDY ENDORSED BY

independent grant for learning &

change

Find out how your team can improve outcomes for your patients with JIA.

Join PR-COIN today!

Contact PR-COIN coordinating center for further information at [email protected]

Learn more at www.PR-COIN.org