Evolution of Integrated Surveillance in the United States

1. Evolution of Integrated Surveillance in the United States Scott J.N. McNabb, Ph.D., M.S. Ruth Ann Jajosky, D.M.D., M.P.H. Robert Fagan Scott Danos, M.P.H. Program Briefing February 15, 2008 Division of Integrated Surveillance Systems and Services National Center for Public Health Informatics Coordinating Center for Health Information and Service Centers for Disease Control and Prevention The findings and conclusions in this presentation are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.

2. Perspectives & Points-of-View

3. McNabb, S.J.N., D. Koo, R.W. Pinner, and J.D. Seligman. Informatics and Public Health at CDC. MMWR. Dec. 22, 2006. 55(Sup02);25 – 8.

4. What is case reporting? Actions taken by providers* to recognize and report a condition of public health importance** to a local, county, or state public health agency *physicians, infection-control, laboratories **required by law or not

5. What is case notification? • Actions taken by a U.S. State or Territorial Health Department to recognize a case of public health significance for the federal level and to notify the federal public health system (e.g., through the National Notifiable Diseases Surveillance System [NNDSS]) • Actions taken by a local, state, and national agency to recognize a public health emergency of international concern (PHEIC) and notify the World Health Organization through the HHS SOC

6. What does Integrated Surveillance Mean? In the process sense of the word, the term integrating Public Health Surveillance means achieving N – 1 systems through which CDC is notified of health outcomes

7. Integrating Public Health Surveillance(interoperating the silos) Case Reporting E A B C D

8. What does Integrated Surveillance Mean? In the process sense of the word, integrating Public Health Surveillance means working to achieve efficient and effective public health work practices that are supported by interoperable information systems to detect, register, confirm, report, and analyze health outcome data while visualizing and reporting out messages that guide [and are guided by] acute and planned responses.

9. What does Integrated Surveillance Mean? In the end-state sense of the word, integrated Public Health Surveillance means a cross-program, person-based registry of health data from case reports vis-à-vis an event-based one.

10. What does Integrated Surveillance Mean? In the end-state sense of the word, integrated PHS means one sign-on, data-entry once, and one system that allows individual access from any computer; one source and set of individualized public health tools for customized data views, command sets, and public health management; one set of guidelines for establishing and managing databases; one-stop shopping for information in public health informatics and one source about integration of public health information for all users; one set of standards for "bringing together" or interoperating existing or new data streams; one grid with one access to all information, but all information is not stored in one place; one medicine (i.e., health without regard to species differences); yet one size does NOT fit all.

11. National Notifiable Diseases Surveillance System (NNDSS) Ruth Ann Jajosky, D.M.D., M.P.H.

12. What is the NNDSS? (1) • State-based public health surveillance system • Based upon a list of Nationally Notifiable Infectious Diseases (NNID) • There are approximately 77 NNID • Unifying principle: regular, frequent, and timely information is necessary for prevention and control of NNID • Council of State and Territorial Epidemiologists (CSTE) • Collaborates with CDC in the administration of the NNDSS • Represents collective voice of epidemiologists in the States and Territories on issues involving public health practice • Through CSTE position statement process, they document policy decisions • Annually approve changes to NNID list and national surveillance case definitions

13. What is the NNDSS? (2) • 57 reporting jurisdictions report data to CDC each week • All U.S. states, NYC, Washington DC, 5 U.S. territories • No personal identifiers sent • States report data voluntarily to CDC • The list of NNID can change each year • Disease reporting is mandated only at the local or state level • The list of reportable diseases is different in each state • U.S. Constitution gives the State Health Officer the authority for public health • CDC assumed responsibility for collection and reporting of NNID in 1961

15. NNDSS Background • At the federal level, the data are used to: • Monitoring trends • Monitoring the effectiveness of prevention and control activities • Program planning and evaluation • Policy development • Research • At the state level, the data are also used as indicated above but also to implement immediate public health action (disease prevention and control activities) • Some NNID are reported to the World Health Organization (WHO) • Public Health Emergencies of International Concern (PHEIC), under the revised International Health Regulations

16. Major NNDSS Products • MMWR Tables I and II • MMWR Table IV (HIV/AIDS, TB data) • MMWR Figure I • MMWR Summary of Notifiable Diseases, U.S. • NNDSS Link (AVR tool) • Annual reporting requirements assessment • Policies and procedures • Data-stewardship agreements, standardized case definitions, residency rules, publication criteria, etc. • NNDSS case definitions web site

18. NNDSS Data • Summary data in National Electronic Telecommunications System for Surveillance (NETSS) format (beginning 1951) • Case-specific data in NETSS format (1992 to 2008) • Two data conversion processes • National Electronic Disease Surveillance System (NEDSS)- to-NETSS conversion • NEDSS-base system (NBS) data from 16 states (core and disease-specific data) • Supports current publication and analytical needs • NETSS-to-NEDSS conversion • Supports analyses of data in a Data Mart for conditions NCIRD* has prevention and control responsibilities • Complex transition converting systems and data • Quality control and quality assurance • Resource intensive • Burden on data analysts • Steep learning curve (using NEDSS data in NEDSS format) *National Center for Immunization and Respiratory Diseases

19. Terms • NNDSS • State-based public health surveillance system • National Center for Public Health Informatics compiles the data which becomes the official U.S. statistics for this system • NETSS • Legacy message format for data reported to CDC for selected NNDSS conditions • CDC-developed surveillance information system • NEDSS • New message format for data reported to CDC for the NNDSS and other systems • CDC-developed a surveillance information system (NBS) • There are other dimensions (NEDSS discussion later in presentation)

20. What’s the difference between NNDSS, NETSS, NEDSS, and NNDSS Link?

21. Products Weekly Tables NNDSS technology neutral Policies Procedures Data Annual Summary Data Release NNDSS Link NETSS HARS STD*MIS Information Systems TIMS NBS ArboNET SARS NEDSS compatible systems Influenza-associated pediatric mortality

22. Overlap among the NNDSS, NETSS, NEDSS, and the Surveillance World NNDSS: 77 Nationally Notifiable Infectious Diseases (NNID; e.g., West Nile Virus) NEDSS: Supports Reporting and Notification of Selected NNID plus Elevated Blood Lead Levels, PHLIS, and FoodNet NETSS: Supports Reporting and Notification of Selected NNID Surveillance World (e.g., BRFSS)

23. Collaborative Work with CSTE • 2007 CSTE-CDC State Reportable Conditions Assessment (SRCA) • Major change in methodology to solicit and document reporting requirements • All reporting requirements (ID and non-ID) in all NNDSS reporting jurisdictions • Transitional step toward working with OntoReason to gather reporting requirements in a Knowledgebase (Kb) at the local level • Objective of Kb: Provide a central up-to-date listing of reportable conditions by jurisdiction to facilitate more complete case-reporting to Public Health and to reduce the burden on Public Health stakeholders to gather this information on their own

24. Future Work with CSTE • 2008 SRCA • Development of algorithms to trigger case reporting from the healthcare sector to local, county, and state public health • Transform human-readable national surveillance case definitions to machine-readable format

25. Collaborative Work with CDC Programs on Data Marts • Development of NCIRD Data Mart • Includes but is not limited to bacterial meningitis and invasive respiratory disease pathogens • Vaccine-preventable diseases (VPDs) • Development of NNDSS Data Mart • Develop a plan to transition data storage and analysis to NEDSS formats for processing of all NNDSS data • Must address existing independent Data Marts containing NNDSS data • Automated logical error-checking with feedback and summary reports to data providers • Current and historical data

27. The History ofNETSS-to-NEDSS Robert Fagan

28. In the Beginning • Before 1985: no direct electronic transmission of public health surveillance data • States did send aggregated counts of 49 National Notifiable Diseases (NNID) to CDC via paper and phone (versus the 77 NNID in 2008) • Data elements: state, MMWR week/year, disease, total count • Slow and difficult to update • The Territory of American Samoa still sends aggregated data by phone or fax • Disease counts sent to CDC based on state-determined definitions, not nationally standardized case definitions

29. 1985: Beginning of the Electronic Era • Extrapolating data from paper reports difficult • Strong need for detailed case reports • Six States with ample resources and staff volunteered for Electronic Surveillance Project (ESP)

30. 1985 – 1990: ESP • Electronic Surveillance Project (ESP) was a national 5-year pilot project for electronic notifiable diseases • Each state developed their own version of an electronic health reporting system • Each state included different coding structures, protocols, and diseases • Only commonality was the 40-byte message standard • CDC developed data-interchange standard to translate received messages • A positive CDC assessment of the pilot supported the development of National Electronic Telecommunications System for Surveillance (NETSS)

31. 1990: NETSS • Developed coding to better reconcile national and state records • Initially intended to expand to all CDC programs • Satisfied states with intuitive, easy-to-use, easy to understand, stable system which needed limited resources…however, • Limited resources restricted the scope of NETSS to event-based PHS • No contact tracing • No case management • Case reporting was event-based, not patient-based

32. 1993 – 1995: EPSVPD • Expanded Program for Surveillance of Vaccine Preventable Diseases: version of NETSS tailored to VPD program • Deployed in two years • Employed by 100% of states • No funding provided to states by CDC • Dedicated, salaried CDC FTE helped states to implement NETSS

33. 1994: CDC Program Participation • STD program initiated move to NETSS • Meningitis, Lyme disease, Hepatitis, and VPD programs extracted data from and integrated into NETSS by 1994 • Double reporting • TB • Immunizations • HIV did not participate • Fear of confidentiality issues • Reluctant to share resources • NETSS matured as far as possible by 1994

34. Enhancing NETSS • 1995: EPO proposed updating NETSS from DOS-based system • States already moving operating systems to Windows • Push for move to Windows-based system at CDC • Further NETSS updates denied in anticipation of migration to a newer system • Existing candidate systems in use by states were reviewed for possible adoption • CSTE requested an updated, application-independent, data interchange system • Health Information Surveillance and Systems Board (HISSB): CDC-wide surveillance committee formed in response to the Katz Report

35. 1998: Integration Project Goals • New NETSS data elements were requested by CDC programs • Define a common user interface, core data dictionary, and architecture for data model • Standardize electronic security protocols

36. 1998: Integration Project • 11 systems involved: NETSS, STD*MIS, HARS, SHAS, ASD, PSD, TIMS, PHLIS, UD, ABC, FoodNet • Dr. Claire Broome worked to establish the title and funds • 1999 – Letter from J. Koplan, CDC Director: “I am requesting that any other surveillance systems development effort be postponed or suspended until you obtain a waiver from HISSB” • 1999: NEDSS Operating Working group (NOW) formed to create National Electronic Disease Surveillance System (NEDSS)

37. NETSS vis-à-vis NEDSS • NETSS • OMB-approved forms • NEDSS • 10-years elapsed between last update to NETSS and inception of NEDSS, during which major changes in disease epidemiology occurred and new laboratory tests developed • JAD sessions held with federal and state and local public health staff to identify data elements to integrate into NEDSS • OMB-approved forms • Paper-based, supplemental reporting enhancements to NETSS • Surveillance program worksheets

38. 1999 – Present: NEDSS “The National Electronic Disease Surveillance System (NEDSS) is an initiative that promotes the use of data and information system standards to advance the development of efficient, integrated, and interoperable surveillance systems at federal, state and local levels.  It is a major component of the Public Health Information Network (PHIN)” http://www.cdc.gov/nedss/

39. Public Health Information Network (PHIN) • Engaged in improving public health by developing and disseminating best practices in research and processes to achieve meaningful and interoperable public health information systems • PHIN was an outgrowth of NEDSS to embrace broader public health surveillance and IT needs borne from shortcomings during 9/11 and anthrax events

40. ESP & NETSS: Lessons Learned (1) • Use an industry standard approach for message creation, not a proprietary software • Create Data Interchange/Message as first step • Broadly distribute the message format; this allows the project to leverage state resources to build solutions • Develop the CDC side of the system right away after distribution of message format to allow CDC to accept data • Develop recommendation for core record part of the application and publish it • Offer the CDC developed software v1.0 free; use only core information allowing rapid deployment

41. ESP & NETSS: Lessons Learned (2) • Work with CDC programs to co-develop disease specific program modules • Divide CDC programs into groups by deployment versions as resources allow • Emphasize Analysis Visualization and Reports (AVR); never release without strong analysis access to data • Start from the very beginning working with user representative partnerships committed to using the developed application • Solutions must accommodate the differences among states as the reporting protocols vary from state to state; public health is a state mandate not federal • Hire dedicated, salaried CDC employee to help states implement NETSS ESPVPD

42. Where do we find ourselves now?

43. NEDSS: Yesterday, Today, and Tomorrow Scott Danos, M.P.H.

44. Clinical Labs WHO Patient Registry Hospital or Healthcare System Healthcare Providers Notifiable Disease Data Flow Case Morbidity Report Event Notification Case-reporting ELR State or Local Health Department Case Notification STD Data Hepatitis Data TB Data

45. NEDSS Characteristics • Patient-centric • Involves highly complex, relational data to support dynamic relationship • NBS: complex physical database • Requires large effort to sustain • Challenges in supporting multiple data formats both standards-based and non-standards-based • Inevitable difficulty in translating data from paper to electronic format

46. Issues at CDC in NEDSS Implementation (1) • Many CDC silo systems were built or allowed to continue or develop • No mandate to promote the use of a single application • Initial target date for full national implementation was 2000, with deployment in 1998 • Not realized • HISSB authorized to distribute $321,000/year to various CDC programs through NEDSS • Standards needed to launch project • Funds were a drop-in-the-bucket • Contributions by technical SMEs were considered but not embraced in lieu of exploring a possible explosive growth in Internet capability • Insufficient public health end-user input about what could and should be built

47. Issues at CDC in NEDSS Implementation (2) • Data model decisions • Conceptual Data Model, derived from the HL7 v2 RIM, was used to develop the physical data model (too literal) • Absence of end-user review and input • Continued challenges in data extraction by SMEs • Software decisions • Silverstream selected for the application server • Failure to identify and incorporate appropriate COTS products • De-duplication • AVR • Standards decisions • HL7 v3

48. First Epidemiology and Laboratory Capacity Request for Proposal (ELC RFP) – July 20, 2001 • Element Development • Implement an integrated data repository • Accept, route and process electronic HL7 messages containing laboratory and clinical content • Conduct and support web browser-based data entry and data management • Develop active data translation and exchange (integration broker) functionality • Modern application programming practices - component based, object oriented and cross platform where possible • Formerly - Develop transportable business logic capability • Develop data analysis, visualization and reporting capability • Implement a directory of public health personnel • Implement a security system and appropriate security policies • Charter Site • NEDSS Base System (NBS)

49. Aspects of NEDSS-Base System (NBS)

50. NBS Fact Sheet (1) • Vision • NBS is a platform which many public health surveillance systems, processes, and data can be integrated in a secure environment • Implementation standards are provided for states developing their own NEDSS compatible systems • What is it? • Platform to support state notifiable disease surveillance and analysis activities • Successor of NETSS • A modular system (all or part of the Base System may be used) • NBS is not… • NEDSS • Complete NEDSS solution • The integrated disease surveillance system for all states