1. TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Early Hearing Detection and Intervention (EHDI) Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Early Hearing Detection and Intervention (EHDI) Leveraging GRID technology to provide integrated child health information services Xidong Deng, Informatics Fellow 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. TM the CDC-EHDI program is directed to: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” Early Hearing Detection and Intervention (EHDI) Ref: Eichwald, NAPHSIS08

3. TM 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. TM 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: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 GoalsNational “1-3-6” EHDI Goals Healthy People 2010 Objective 28−11Healthy People 2010 Objective 28−11 CDC PART 1 and GPRA 2 OMB performance measuresCDC PART 1 and GPRA 2 OMB performance measures EHDI Screening and Follow-Up Survey Program Assessment Rating Tool 1 Government Performance Results Act 2 Ref: Eichwald, NAPHSIS08

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

7. TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Early Hearing Detection and Intervention (EHDI) Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Early Hearing Detection and Intervention (EHDI) 2007 EHDI Survey Results

8. TM 2007 Documented EHDI Data Items Number of Respondents: 48 states and 2 territories Occurrent Births – according to state & territorial EHDI programs 4,016,827 – 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. TM Impact of data quality Reaching the Joint Committee for Infant Hearing (JCIH) screening 2000 benchmark of 95%Reaching the Joint Committee for Infant Hearing (JCIH) screening 2000 benchmark of 95% Track of follow-up hearing loss diagnosis and early intervention activitiesTrack of follow-up hearing loss diagnosis and early intervention activities

10. TM Integrating Birth and EHDI Data

11. TM Linking Birth with EHDI Data

12. TM Linking Birth and EHDI Data

13. TM Integration Immunization

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

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

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

18. TM 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. TM What is Grid? 1.Software environment based on open standards and protocols 2.Enables the sharing of disparate, loosely coupled IT resources across organizations and geographies a) Resources include computer cycles, storage capacity, databases, applications, files, sensors, scientific instruments or, in the case of collaboration, people 3.All resources are capable of being dynamically provisioned to users, services or applications as needed 4.Delivers nontrivial qualities of service and levels of security 5.Provides a common, middleware to share applications, services, data, information, etc.

20. TM 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. TM 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. TM 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. TM 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. TM 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: 1.http://en.wikipedia.org/wiki/Service-oriented_architecturehttp://en.wikipedia.org/wiki/Service-oriented_architecture

25. TM Before SOA: Tightly coupled, monolithic applications

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

27. TM Grid Services Interact Publish Service Registry Service Provider Service Consumer Find Register/ Bind, Execute Core Services ` Authentication Authorization Access control Transport Logging Distributed Query Audit Encryption Routing Monitoring Discovery Standards-compliant web services that are invoked using xml requests following SOAP standard Source: Ian Foster, et al. The Anatomy of the Grid.

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

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

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

31. TM Public Health Grid

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