1. Public Health Surveillance Pre-Conference Workshop Pittsburgh, PA June 12, 2011

2. Workshop Goals Discuss the current surveillance environment – Legal and historical basis for public health surveillance – Events changing today’s surveillance landscape – The 1995 “Blueprint” Review recent discussions to date – The Denver meeting Generate ideas (and reach consensus?) for guiding principles and recommendations, especially in four areas: – The NPHSS – National surveillance decision making – Surveillance domains and strategies – Data issues

3. Overview of Current Surveillance Environment Legal and Historical Basis of Surveillance The 1995 “Blueprint for a National Public Health Surveillance Strategy for the 21 st Century” The Changing Landscape The Denver Surveillance Workshop Unresolved Issues Exercise Discussion

4. Historical and Legal Basis of the US Public Health Surveillance System Rhode Island, 1741: law that required tavern owners to report cases of contagious diseases among their patrons Massachusetts, 1874: first state to begin systematic surveillance with voluntary reporting by physicians of prevalent diseases using a standardized format

5. Historical and Legal Basis of the US Public Health Surveillance System (Cont’d) Michigan, 1893: first state to mandate reporting of specific infectious diseases By 1901, all states and municipalities had laws that required reporting of selected communicable diseases State-based legal authority to mandate reporting of personal health information to public authorities was left to the states by the 10 th Amendment of the US Constitution – …powers not delegated to the federal government, nor prohibited by it to the States, are reserved to the States…

6. Historical and Legal Basis of the US Public Health Surveillance System (Cont’d) 1850: first national reporting of health information with US first publishing mortality and decennial census data 1878: Congress authorized the federal government to collect data on diseases such as cholera, smallpox, plague and yellow fever requiring quarantine 1893: law called for the collection of disease information each week from each state and municipality 1914: PHS personnel first assigned to state health departments to assist in weekly disease reporting to the federal government (forerunner of today’s MMWR tables)

7. Historical and Legal Basis of the US Public Health Surveillance System (Cont’d) 1951: CDC asked the Association of State and Territorial Health Officers to charge the state epidemiologists with deciding which diseases should be reported nationally. CSTE was formed and generated the first list of notifiable diseases for the country. 1990: in consultation with CSTE, CDC published Case Definitions for Public Health Surveillance, the first such set of standard criteria for reporting for the nation.

8. Comments on the Historical and Legal Basis of National Surveillance Rationale and strong impetus for state/local authority for many surveillance activities is the need for state/local officials to take direct action to protect the public State surveillance authority has lead to considerable variation in what conditions and data to report Local, state, and federal levels each play distinct and important roles in surveillance Much national data comes from data collected at the state/local levels under their very broad legal authority All state/local data sharing with the federal government is voluntary

9. Challenging Custom: Rethinking National Population Surveillance Policy in a Global Public Health Age By Rebecca Katz and Sara Rosenbaum George Washington University Journal of Health Politics, Policy and Law, Vol. 35, No. 6, December 2010

10. “The Blueprint”

11. Highlights of the Blueprint System fragmentation, limited resources, changing medical care system, and new IT systems require a new, coordinated, flexible approach for public health surveillance that matches data collection techniques and funding levels to the goals of assessment at each level of the PH system (National Public Health Surveillance System)

12. Highlights of the Blueprint (Cont’d) The NPHSS – The NPHSS and its constituent surveillance systems should be constructed in a rational manner, based on sound epidemiologic and public health principles – Recommended methods and data elements should be specified for each outcome at each level of the public health system, based on what is most appropriate for each level and the goals

13. Highlights of the Blueprint (Cont’d) The NPHSS – …an integrated information system linking relevant surveillance data in states and multiple federal agencies in a virtual system that appears as one to users – …maintained by CDC – An interdisciplinary group of epidemiologists should reach consensus about what should be under surveillance in each discipline and the most appropriate methodology and information system for each.

14. Public Health Surveillance Systems: Similarities and Differences Data Flow Reportable communicable diseases Biosense (original implementation) Nat. Healthcare Safety Network (NHSN) CDC maintains centrally State Access Prior to CDC CDC maintains centrally None Database Surveillance Application Distributed Providers to local/state health departments, then to CDC Providers to CDC and state health departments Central At the same time as CDC Each state maintains its own Behavioral Risk Factor SS CDC maintains centrally Respondents to CDC, then to state health departments Central and state data sets distributed After CDC has prepared state data

15. Partial list: National injury data systems CategoryData systems Behavioral risk factorsBRFSS, YRBS, NHIS MorbidityNEISS NHAMCS National Hosp. discharge survey HCUP NEMSIS MortalityDeaths Auto/transport injuryFARS Railway safety statistics Automotive behavioral riskVarious surveys Violent deathsNVDRS Uniform crime reports Crime and victimizationMultiple data sets Drug abuseDAWN National survey on drug use OtherFire-related Poisoning Nat’l Trauma Data Bank

16. Highlights of the Blueprint (Cont’d) Collaboration – There must be collaboration among all levels of the public health system; however, individual states retain the authority to make decisions about the outcomes for which surveillance will be done.

17. Highlights of the Blueprint (Cont’d) Data quality – Analysis and interpretation of surveillance data are only as good as the quality of the data collected.

18. Highlights of the Blueprint (Cont’d) Privacy – Personal identifying information should be accessible only to the public health professionals who need to collect additional information of importance.

19. Highlights of the Blueprint (Cont’d) Evaluation – An evaluation process is needed that can be applied at all levels of the public health system – Standards of excellence for surveillance and assessment functions should be developed

20. Why Discuss Surveillance Now? Because the surveillance landscape has changed.

21. Three Major Influences Heightened need for public health preparedness New technologies Healthcare reform

22. In 1995 West Nile Virus, 9/11, anthax attacks, SARS had not yet occurred. No state had ELR. The first annual PHIN conference was still 7 years away. One year after the Clinton health care reform effort failed.

23. Ramifications 1995 Public health held “public health” data Public and legislators more accepting of waiting for public health reports Public health often collected much of its data Data collectors “owned” the data and had responsibility for it Confidentiality based on physical security Today The public and non-public-health government agencies want the data; blurring of distinction between public health and non-public-health data Public and legislators expect the data and information instantaneously and continuously Public health increasingly accepts data collected by others Data ownership and control are now less clear Confidentiality based on cyber security

24. Ramifications (Cont’) 1995 Data quality depended on the data source and data collector Flow of data was usually from local to state to federal levels Federated state model of PH surveillance allowed variation among states CSTE and CDC were the primary parties in decision making and governance Today Data quality now also depends on data processors between the source and the collector Flow of data can now easily and efficiently reach local, state and federal levels simultaneously Technology now demands uniformity among states Others (e.g., White House, Homeland Security, CMS) increasingly interested in decision making and goverfnance

25. How Have We Responded Since 1995? CSTE Position Statements Focused Activities

26. CSTE Position Statements Year Subject Implemented? Yes Partial No 1994National PH Surveillance SystemX 1994Disease Priorities for NPHSSX 1994Review of NNDSSX 1997Implementation of NPHSSX 1998Implementation of NPHSS for Occupational and Environmental SurveillanceX 1998Planning Process for Injury? 1998Access to and Disseminating NPHSS DataX 2000Coordination of NEDSS/HAN/Epi-XX

27. CSTE Position Statements Year Subject Implemented? Yes Partial No 2001Standardizing PH Case definitionsX 2003Data Collection for PH Surveillance? 2006HL7 Version 2.5 for PH ReportingX 2003Coordinated State/Fed/Local PH Surveillance using BiosenseX 2007CSTE Official List of Nat. Not. ConditionsX 2008Criteria for Inclusion of Conditions on NNC List and Categorizing as Immediate/RoutineX 2009Core Data Elements for ReportingX 2009Implementation of ELRX 2010Modification of Process for Recommending Conditions for National SurveillanceX

28. CSTE Activities Committees: – Surveillance Practice and Implementation Subcommittee – Surveillance Policy Subcommittee – ELR Subcommittee – Indicators Subcommittee Liaisons: – OMS – PHDSC – JPHIT – AVR – ASTHO Informatics – HL7 – NAPHSIS – NHSN

29. CSTE Activities (Cont’d) Examples of Projects: – Co-Lead the CSTE/CDC ELR Taskforce – Epidemiology Capacity Assessments – State Reportable Conditions Assessments – Participate on CDC Workgroups (e.g., Biosense inititative, Case Report Standardization Workgroup) – Provide Expert Comments (e.g., ONC on Meaningful Use) – CSTE and CDC/DISSS Retreat on Integrated Surveillance, Sept 2007

30. “The Denver Workshop” Meeting of 40 public health leaders in Denver, February 2011 – CSTE Exec. Bd., local/state epidemiologists, academicians, CDC, ASTHO, NACCHO, PHII – Purpose: Update strategic vision for public health surveillance, identify new areas of surveillance activity, and define surveillance activities for CSTE – Presentations, facilitated discussions and breakout groups – Special report available

31. Responses to a Denver Pre-Meeting Survey Three major categories: How to revise the Blueprint Governance of Surveillance Technology Aspects of Surveillance

32. Focus of Denver Workshop Discussions What needs revising in the Blueprint? Governance of Surveillance Technology Aspects of Surveillance Local and Big City Issues

33. How to revise the Blueprint Re. the NPHSS: “Is one system (NPHSS) realistic?” “…the NPHSS has never materialized the way it was envisioned. Can we work on a more realistic vision with practical strategies to make such a NPHSS a reality within say next 10 years?” “…never replaced the ‘NNDSS’…” “…is not feasible as originally conceived with today’s resources and rate of information technology change…” “…should include new areas, e.g., substance abuse, oral health, mental health, BT preparedness, and healthcare infections…”

34. Governance of Surveillance “The feasibility of recommendation and subsequent adoption of standard methods is not limited by technology, but rather by federalism.” “…need to coordinate fragmented electronic data management activities…” “The biggest challenge is to develop widely supported principles for how analysts with access to the same PH data relate to each other.” Important role of local and big city PH

35. Technology Aspects of Surveillance “…we need a more systematic effort to shape and evaluate the use of EHRs for public health…” “…the blue print identifies the need for targeted data collection—however, we have seen expansion of data elements without clear utility and improvements of data quality.”

36. Technology Aspects of Surveillance (Cont’d) Role of informatics in chronic disease surveillance Role of social networking for PH surveillance Quality assurance of electronic data Increasing the public health workforce’s informatics expertise

37. Possible Organization of a New Strategy Paper (based on Denver input) I.Introduction II.The Basis of Public Health Surveillance: History and Principles, Goals and Methods (Tables of surveillance goals and methods) III.Current Influences Affecting the Changing Landscape of Public Health Surveillance IV.Public health’s response to the changing surveillance landscape V.A Vision of the Future Potential for Surveillance VI.Updated Guiding Principles for Public Health Surveillance VII.Recommendations VIII.References

38. Emphasis on Some Previous Guidelines Attention to core principles of surveillance is critical, including: – establish surveillance priorities using sound measures, such as disease severity and availability of preventive measures; – identify the goals of each surveillance system; – use surveillance data, especially at the local level; – demonstrate the value of surveillance data by educating the suppliers of data through good visualization/reporting tools; – apply the measures of good surveillance systems; – incorporate bi-directional communication that enables medical providers to take appropriate actions on the basis of public health information; – ensure data security, especially in the IT era; – prioritize effort and use resources wisely.

39. Emphasis on Some Previous Guidelines (Cont’d) The purposes of surveillance are different at different levels of government. The use of surveillance data reflects the distinctive roles of local, state, and federal public health agencies. The purpose for collecting specific surveillance data should determine the specific surveillance methods used.

40. Draft Guidelines—New Emphasis One of public health’s main roles in surveillance is data evaluation, analysis, interpretation, and use for disease prevention. Data quality needs to be only as good as its purpose. New data sources should not replace old proven data sources until they have been assessed and deemed an improvement over the old sources.

41. Draft Guidelines—New Emphasis In this age of national standards, states and localities will continue to need local flexibility (e.g., free text fields in electronic forms). But, states and localities must be prepared to yield to national standardization of surveillance methods and technology when state-to-state variation is unnecessary.

42. Draft Guidelines—New Emphasis Surveillance data should flow by the most efficient, timely and secure manner, while recognizing roles and responsibilities among public health agencies and their partners, as defined by local, state, and federal laws.

43. Draft Recommendations for CSTE With CDC, CSTE should convene a committee to prepare a governance document that specifies the process for national surveillance policy setting. CSTE should evaluate whether the annual position statement process is adequately meeting the need for speedy decision making.

44. Draft Recommendations for CSTE (Cont’d) CSTE must continue to assist state/local health departments in implementing technical solutions to support public health surveillance. CSTE should define the public health information technology workforce needs and explore ways to build informatics capacity in states and large cities

45. Draft Recommendations for CSTE (Cont’d) CSTE should actively support epidemiologists in the evaluation of data and surveillance methods. CSTE, in collaboration with and support from CDC, should evaluate what real-time data/information is most valuable for situational awareness.

46. Draft Recommendations for Federal Partners CDC should collaborate with CSTE to develop a surveillance decision-making committee and governance document. CDC should increase its informatics training specifically aimed at the epidemiology workforce. CDC should provide epidemiologists with additional training in how to summarize, package and explain epidemiological data.

47. Draft Recommendations for Federal Partners (Cont’d) The federal government should provide additional funding to enable electronic health record (EHR) data to be used by public health, similar to the incentives provided to Eligible Providers and Eligible Hospitals. CDC should work to increase surveillance capacity in several areas currently with low capacity, including substance abuse, mental health, oral health, and disparities monitoring.

48. Draft Recommendations for Federal Partners (Cont’d) CDC should provide funding for pilot projects in selected states to do quality assessment of surveillance data and to conduct cost-benefit analyses of different surveillance data and methods.

49. Individual Exercise Take 5 minutes to answer the following question: “What is an important issue, concept, guiding principle, or recommendation that a current strategic surveillance paper must address or include?” The answer can be something already mentioned or something new, but must be, in your view, an essential part of a sound strategy paper. Write your answer on one of the 3x5 cards provided. You can provide as many answers (cards) as you wish. You may remain anonymous.

50. Discussion

51. Issues Needing Further Discussion The NPHSS Process for making surveillance policy decisions Incorporating various surveillance domains and strategies into the NPHSS concept Data issues