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

2. Movement Toward Learning Networks

3.  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?

4. Research is Not Quickly Implemented  Research IS important but application lags  Average of 17 years for new evidence-based findings to reach clinical practice 1  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 http://www.ihi.org/resources/Pages/Publications/Managingclinicalknowledgeforhealthcareimprovement.aspx 2. http://www.newyorker.com/magazine/2013/07/29/slow-ideas http://www.newyorker.com/magazine/2013/07/29/slow-ideas

5. 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)

6. 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

7. 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

8. Learning Networks are Successful – ImproveCareNow example

9. 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 patients Standardized care

10. PR-COIN Structure, Approach and Achievements

11. 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 Rate Reduce drug toxicity Catch uveitis early and treat Physical function measure Toxicity Lab monitoring Uveitis Screening Improved Outcomes Improved Processes Lead to

12. PR COIN Approach for Transforming Care Delivery in JIA Population Proven QI methodology 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 IHI Breakthrough Series Model QI tools to test small changes to improve clinic processes Share best practices to reduce cost & time Shared Decision Making Population Management Pre-Visit Planning Improved Care, Processes and Outcomes AD P S

13. PR-COIN Achievements: Examples of Statistically Significant Progress As of October 2014

14. 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

15. 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

16. Membership Benefits and Participation Expectations

17. 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

18. 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 Entire Organization Benefits to Rheumatology Division

19. 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

20. PR-COIN SPONSORS (all) An Anonymous Family Foundation CCRF Place Outcomes Award STUDY ENDORSED BY independent grant for learning & change

21. 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 Learn more at www.PR-COIN.org