Leveraging GRID technology to provide integrated child health information services

1. Leveraging GRID technology to provide integrated child health information services Xidong Deng, Informatics Fellow The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention and should not be construed to represent any agency determination or policy.

2. Early Hearing Detection and Intervention (EHDI) • the CDC-EHDI program is directed to: • “develop standardized procedures for data management to ensure quality monitoring of newborn and infant hearing loss screening, evaluation, and intervention programs and systems” Ref: Eichwald, NAPHSIS08

3. National Goals – The 1-3-6 Plan • All newborns will be screened for hearing loss before one month of age, preferably before hospital discharge. • All infants who screen positive will have a diagnostic audiologic evaluation before 3 months of age. • All infants identified with a hearing loss will receive appropriate early intervention services before 6 months of age.

4. EHDI Screening and Follow-Up Survey • The purpose of the CDC-EHDI survey is to collect and report calendar year aggregate data and will be used as the official source to help assess progress towards: • National “1-3-6” EHDI Goals • Healthy People 2010 Objective 28−11 • CDC PART1 and GPRA2 OMB performance measures Program Assessment Rating Tool1 Government Performance Results Act2 Ref: Eichwald, NAPHSIS08

5. EHDI Survey • Percent Screened = Number Screened / Occurrent Births • Number of newborn screened: reported by state EHDI program • Occurrent Births: reported by ? • State EHDI program • Vital records program

6. Differences in State Screening Rates of 4% or More Ref: Eichwald, NAPHSIS08

7. 2007 EHDI Survey Results

8. 2007 Documented EHDI Data Items • Number of Respondents: 48 states and 2 territories • Occurrent Births • according to state & territorial EHDI programs4,016,827 • as reported by Vital Records programs: 4,056,618 • Number Screened n = 3,775,361 • Percent Screened • based on # of births reported by state EHDI programs 94.0% • excluding infant deaths & parental refusals) 94.4% • based on the # of births reported by Vital Records 93.1%

9. Impact of data quality • Reaching the Joint Committee for Infant Hearing (JCIH) screening 2000 benchmark of 95% • Track of follow-up hearing loss diagnosis and early intervention activities

10. Integrating Birth and EHDI Data

11. Linking Birth with EHDI Data

12. Linking Birth and EHDI Data

13. Immunization Integration Integration

14. Centralized System Other authorized users Public Health Practitioner Query Tool State B VR State A EHDI National EHDI Processing State B Immunization State A VR State B EHDI State C VR State C EHDI

15. System Redundancy and Data Silos Immunization EHDI Bloodspot Vital Records

16. Challenges • Data widely distributed • Many redundant systems, application silos and data silos. • Many cultural, social and political impediments to data sharing • Volume of public health data growing rapidly • Requires a stronger economic model for long-term financial sustainability

17. Query (SPARQL) Ontologies, Rules (OWL, RDF Processing & Alerting Distributed System Other authorized users Public Health Practitioner State A EHDI State B Integrated Child Health System State C Immunization State C EHDI State A VR State A Bloodspot State C VR

18. An Innovative Solution Attributes: • Leverage existing organizational capacity • Address privacy and security concerns • Local control of data and services • Political acceptance • Flexibility and scalability • Timely response

19. What is Grid? • Software environment based on open standards and protocols • Enables the sharing of disparate, loosely coupled IT resources across organizations and geographies • Resources include computer cycles, storage capacity, databases, applications, files, sensors, scientific instruments or, in the case of collaboration, people • All resources are capable of being dynamically provisioned to users, services or applications as needed • Delivers nontrivial qualities of service and levels of security • Provides a common, middleware to share applications, services, data, information, etc.

20. National Public Health Grid Economic Model • Open source • Ability to leverage everything • Software, expertise, infrastructure • Open collaborative framework • Enlist stakeholder participation at all levels: Local, state, federal, university, centers of excellence • Leverage existing stakeholder computer infrastructure • Distribute the informatics problem nationally, solving locally • Break reliance on vendor software and licensing • Break reliance on monolithic application development Ref: Hall and Savel, HIMSS 2008

21. National Public Health Grid Social / Political Model • Enables co- and continuing-existence of legacy applications • Can reuse existing applications and infrastructure • Not a replace and rebuild from scratch model • Provides technical framework for social / political collaboration through access grid • Grid is not a product; it’s more of an evolution • Grids are not purchased; they are built • Not a magic black box ordered and deployed • Laying the groundwork for the evolution of a distributed computing environment Ref: Hall and Savel, HIMSS 2008

22. National Public Health Grid Security Model • Based on • PKI: Public Key Infrastructure • X.509 Certificates • SSL (Secure Sockets Layer) protocol • As secure as anything in practice today • Management and curation of data controlled locally • Service & application access control managed locally • Security architecture remains local • Certificate bridging technologies allows single-sign on Ref: Hall and Savel, HIMSS 2008

23. National Public Health Grid Technology Model • Standards-based • Service-oriented architecture (SOA) • Distributed, federated database access • Distributed, federated web services access • Push and pull data exchange architecture • Not uni- or bi-directional model, but multi-directional Ref: Hall and Savel, HIMSS 2008

24. What is Service Oriented Architecture (SOA)? “SOA provides methods for systems development and integration where systems group functionality around business processes and package these as interoperable services.”1 • Reference: • http://en.wikipedia.org/wiki/Service-oriented_architecture

25. Before SOA: Tightly coupled, monolithic applications

26. Grid After SOA: Loosely coupled services –managed by Grid Data Processing Service Alternate Modeling Service Visualization Service Modeling Service Alerting Service Alternate Visualization Service

27. Other authorized users Public Health Practitioner State A EHDI State B Integrated Child Health System Query (SPARQL) State C Immunization Ontologies, Rules (OWL, RDF Processing & Alerting State C EHDI State A VR State A Bloodspot State C VR Data Service

28. Data Aggregator Services Mapping: Common Data model Results Aggregator Visualization Analysis Services Mapping: Standard Vocabulary Data Mining Best Practices KB GIS NLP Service Syndrome Classification KB statistics Case Definitions KB Graphs Bio/surv Algorithms Biosurv Algorithms A Bigger Picture – Integrated Child Health Information Services Public Health Practitioner Query Reporting & Alerting E-mail Web Forum Phone Text Message

29. Grid Represents … • Different way of thinking • Different way of solving problems • A long-term, fiercely collaborative approach • Large-scale computer trends

30. Public Health Grid

31. Thank you www.cdc.gov/ncbddd/ehdi/data.htm phgrid.blogspot.com xdeng@cdc.gov