1. The Children’s Data Network: An Update… September 2, 2015

2.  Each year, government, foundations, and private agencies across throughout California invest significant resources in programs serving the children and families, including the collection of data.  Although each agency collects a tremendous amount of valuable administrative client and case data, there is no formal platform for integrating data to support an agenda of research and evaluation.  Additionally, with shrinking budgets, agencies have increasingly limited resources and capacity for data analysis and thus are more likely to focus on required reporting rather than “mining” information that may be useful for informing programs and policies. The problem (Not unique to California)

4. A University- Agency-Community Data and Research Collaboration

6. Opportunity  Cost-effective research and evaluation for population health monitoring/surveillance

7. Assembling statistical “stories”… “Each person in the world creates a Book of Life. This Book starts with birth and ends with death. Its pages are made up of the records of the principal events in life. Record linkage is the name given to the process of assembling the pages of this Book…” (Dunn, 1946) birth records population-based information Child A Child B Child C Child D Age X ( - ? - ) Full Birth Cohort home visit deathabuse report Head Start abuse report developmental services

8. Data Integration Process? Building off of best practices in data security and management Record from Agency A (id = A4568) Record from Agency C (id = 9978) Record from Agency B (id = Yt9hU4) Probabilistic Algorithms Master ID = 1f567 Master IDAgency AAgency BAgency C 1f567 A4568Yt9hU49978 Ongoing Probabilistic De- duplication of Data Archive Re-integration with Confidential / Clinical Information

9. Overview The CDN serves a facilitating process Ultimate authority for the use of the data always resides with individual agency Agency and funder driven research agenda Supporting outcomes and accountability reporting (master id) Scientific advisors, affiliated researchers, IRB and Agency Board approvals… Best practices based on lessons learned from other centers

10. A few projects… 1.Substance exposure 2.RWJF – community assets 3.SF HAS 4.Child Care 5.Prevention in Orange County

11. Vision Near-termMedium-termLong-term “Proof of concept” projects through individual agency data sharing agreements with CDN Establishment of universally agreed upon “standard operating procedures” for working with already linked, de- identified data Transition into public agency body (?) (Western Australia, Statistics Denmark model)

12. Questions? www.datanetwork.org Emily Putnam-Hornstein, PhD (ehornste@usc.edu)ehornste@usc.edu