1. ACHIEVING A LEARNING HEALTH SYSTEM THROUGH COLLABORATIVE ENGAGEMENT AND THE CREATION OF A STATEWIDE RESEARCH INFRASTRUCTURE AND CLINICAL DATA RESOURCES Christine B. Turley, M.D. AAMC Learning Health System Research Awards Kickoff Meeting February 12, 2015

2. OUTLINE Health Sciences South Carolina Overview Enabling a Learning Health System Engagement Infrastructure Governance Collaboration

3. Health Sciences South Carolina Participating Organizations

4. 4

5. 5

6. SCOPE Established in 2004, HSSC encompasses the 3 research intensive Universities, the 3 medical schools, and the 7 largest health systems in South Carolina Purpose to improve clinical research opportunities, enhance multi-system engagement and foster/support health system improvement through research Vision evolution to enable a regional Learning Health System for South Carolina 6

7. EMR Claims Other Data Sources CDW PROs Novel Data Capture Subject Matter Experts Safety QI Outcomes Implementation Clinical Research Governance Dissemination Compliance Data Quality Security Data Request and Review IRB Privacy Data Patients and Clinical Activity Patients and Clinical Activity

8. HSSC ENABLERS eIRB Platform Research Collaborator identification tool for investigators Clinical trials match for patients Clinical Data Warehouse Participatory Governance system Education and Outreach program Pilot Grant Program Clinical Analytics Platform 8

9. CDW PATIENT DATA 1993-2014 9 DESCRIPTIONCOUNTS Total Unique Patients 3,876,258 Total Patients Received (Before Merging) 4,220,423 Total Patients Merged 344,165 Total Patients GHS (1995) 1,300,769 Total Patients MUSC (1993) 1,318,588 Total Patients PH (2001) 1,238,255 Total Patients SRHS (2011)* 362,811

10. CDW VISIT/ENCOUNTER DATA 2007-2014 10 DescriptionTotalsIPOPED Total Visits 26,251,893 1,093,246 22,916,433 2,242,214 Total Visits GHS 17,266,833 593,467 15,477,169 1,196,197 Total Visits MUSC 9,414,709 262,704 8,695,872 456,133 Total Visits PH 5,424,362 426,815 3,901,986 1,095,561 Total Visits SRHS 1,620,653 93,218 1,217,940 309,495

11. 11 GOVERNANCE OF DATA

12. Collaborative, Engaged Members 12 OperationsPolicies

13. STATEWIDE ENGAGEMENT Focused strategy to engage multi-level users In person, web, computer lab, small and large group training CDW Champions at each location Individuals trained across all member institutions i2b2 query tool, CDW and Data Request Process 13

14. RESULTS eIRB usage: over 3,800 annual users, over 1,600 studies annually and 190 projects accepted through IRB reliance program CDW: HSSC i2b2 statewide data queries >2337 in year 1, with over 160 users Statewide training and engagement activity 33 known grant applications, 15 funded projects 14

15. Establishing structure and governance to bring together data and people across systems for multi-purpose use Multi-level engagement model Current sample clinical activities in cycle: Statewide Surgical Quality Collaborative Readmissions, stroke, medical errors, childhood pneumonia, high risk asthma, congenital heart disease, out of hospital cardiac arrest SC Health Coordinating Council—identifying and targeting health concerns statewide 15 HSSC LEARNING HEALTH SYSTEM

16. 16

17. 17

18. DISCUSSION 18