Leading Quality Improvements in
Pediatric Rheumatology Care
A Learning Network Approach
Movement Toward Learning Networks
Are JIA Patients Achieving Desired Outcomes?
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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?
Research is Not Quickly Implemented
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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
QI systems are needed
to support improvement
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-theQuality-Chasm-A-New-Health-System-for-the-21stCentury.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.
“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)
*http://www.cincinnatichildrens.org/service/j/anderson-center/learning-networks/default/
The Case for a JIA Learning Network
JIA:
Challenge:
Variation
Opportunity:
PR-COIN
• 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
• Variation exists in
treatment patterns by
providers, medical centers
and geographic locations
• Network of experts
• Developed tools and
successful processes
• Learning from peers and
share best practices
• Maintenance of
Certification
• Challenge: Patients are
not reaching optimal
outcomes (inactive
disease, low pain score)
• Outcomes:
• Improve care
• Increase family
engagement
in process
PR-COIN Uses QI to Improve Care
International, quality improvement Learning Network working to
improve care for children with Juvenile Idiopathic Arthritis
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Launched in 2011 as
sustainable collaborative of
pediatric rheumatologists with
focus on quality improvement
initiatives
15 Sites -2 Canada, 13 in US,
and growing*
Over 2,160 unique patients
registered in database and
growing monthly*
*As of January 2015
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.
Figure 1
Percent of IBD Pa ents in Remission
85%
80%
75%
70%
Remission Rate
65%
Remission rate: 60% to 77%
60%
55%
66 Care Sites
>500 physicians
>15,000 patients
Standardized care
50%
45%
40%
35%
30%
2007
2008
2009
2010
Year
2011
2012
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.
Improved
Processes
Lead
to
Toxicity Lab
monitoring
Uveitis
Screening
Physical
function
measure
QI
Methods
Improved
Outcomes
Improve Inactive Disease Rate
Reduce drug toxicity
Catch uveitis early and treat
PR COIN Approach for Transforming
Care Delivery in JIA Population
Performance tracking
of team and network
outcome and process
measures
P
A
Tracking 10 sites submitting
performance
over time data into Registry
1,850 unique patients
in database as of
September 2014
D
S
IHI
Breakthrough
Series Model
Share best
practices to
reduce cost &
time
QI tools to test
small changes
to improve
clinic processes
Growing
data
repository
Proven QI
methodology
Shared
Decision
Making
Shared Tools
Improved
Care,
Processes
and
Outcomes
Population
Management
Pre-Visit
Planning
PR-COIN Achievements:
Examples of Statistically Significant Progress
Percent of patients in remission on medications
for 6 months
100
80
60
40
20
0
Percent of patients on DMARDs who had medication
counseling within the last 12 months
100
80
60
40
20
0
As of October 2014
Parent Engagement Supports Improvement
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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 all 13 teams participate
The Facebook Group is growing and currently has
68 family members
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)
Independent Education
Grant
STUDY ENDORSED BY
Membership Benefits and
Participation Expectations
Membership Benefits
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Maintenance of Certification credit (upon meeting requirements) and
platform for quality improvement activities for Fellows
Monthly team and network level aggregate 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
Participation in twice yearly Learning Sessions and monthly webinars
Access to Member Only websites including use of the Population
Management Tool
PR-COIN materials, documents, presentations, and tools
Citation on public website
Web-based data submission
Support with IRB and legal processes
Benefits at Every Institutional Level
- Exemplar for other
- Improve patient
divisional QI efforts
outcomes and
- Join a growing
engagement
international
network
- Access to QI tools
of recognized
and broad network of
institutions
peers
- Receive QI initiative
- Maintenance of
support aligned with
Certification Part IV
organizational
- Learn best
priorities
practices
- Recognized as
a leader in improving
health care
- Increased visibility
and branding potential
as members of
international
collaborative for
outcomes excellence
Benefits to
Rheumatology
Division
Benefits to
Pediatrics
Department
Benefits to
Our Entire
Organization
Participation Expectations
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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 for managing data entry and human subjects
requirements (IRB, patient consent and legal agreements)
Annual site participation fee each fiscal year (July – June)
Contact PR-COIN for additional details
PR-COIN SPONSORS (all)
CCRF Place Outcomes Award
independent grant
for learning & change
An Anonymous Family Foundation
STUDY ENDORSED BY
Learn more at www.PR-COIN.org
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 pr-coin@cchmc.org