Public Health Surveillance Pre-Conference Workshop

Pittsburgh, PAJune 12, 2011

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

Overview of Current Surveillance Environment

• Legal and Historical Basis of Surveillance• The 1995 “Blueprint for a National Public Health

Surveillance Strategy for the 21st Century”• The Changing Landscape• The Denver Surveillance Workshop• Unresolved Issues• Exercise• Discussion

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

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 10th Amendment of the US Constitution– …powers not delegated to the federal government, nor

prohibited by it to the States, are reserved to the States…

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)

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.

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

Challenging Custom:Rethinking National PopulationSurveillance Policy in a Global

Public Health Age

By Rebecca Katz and Sara RosenbaumGeorge Washington University Journal of Health Politics, Policy and Law, Vol. 35,

No. 6, December 2010

“The Blueprint”

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)

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

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.

Public Health Surveillance Systems:Similarities and Differences

Data Flow

Reportable communicable diseases

Biosense(original

implementation)Nat.

Healthcare Safety

Network(NHSN)

CDCmaintainscentrally

State Access

Prior to CDC

CDCmaintains centrally

None

Databas

e

Surveillance

Application

Distributed

Providers to local/state

health departments, then to CDC

Providers to CDC

Providers to CDC

and state health

departments

Central

CentralAt the same time

as CDC

Each state maintains

its own

Behavioral Risk Factor

SS

CDCmaintainscentrally

Respondents to CDC, then to state healthdepartments

Central and state data

sets distributed

After CDC has

prepared state data

Partial list: National injury data systemsCategory Data systems

Behavioral risk factors BRFSS, YRBS, NHIS

Morbidity NEISSNHAMCSNational Hosp. discharge surveyHCUPNEMSIS

Mortality Deaths

Auto/transport injury FARSRailway safety statistics

Automotive behavioral risk Various surveys

Violent deaths NVDRSUniform crime reports

Crime and victimization Multiple data sets

Drug abuse DAWNNational survey on drug use

Other Fire-relatedPoisoningNat’l Trauma Data Bank

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.

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.

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.

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

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

Three Major Influences

• Heightened need for public health preparedness

• New technologies

• Healthcare reform

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.

Ramifications1995

• 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

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

How Have We Responded Since 1995?

• CSTE Position Statements• Focused Activities

CSTE Position Statements Year Subject

Implemented? Yes Partial No

1994 National PH Surveillance System X

1994 Disease Priorities for NPHSS X

1994 Review of NNDSS X

1997 Implementation of NPHSS X

1998 Implementation of NPHSS for Occupational and Environmental Surveillance X

1998 Planning Process for Injury ?

1998 Access to and Disseminating NPHSS Data X2000 Coordination of NEDSS/HAN/Epi-X X

CSTE Position Statements Year Subject

Implemented? Yes Partial No

2001 Standardizing PH Case definitions X

2003 Data Collection for PH Surveillance ?

2006 HL7 Version 2.5 for PH Reporting X

2003 Coordinated State/Fed/Local PH Surveillance using Biosense X

2007 CSTE Official List of Nat. Not. Conditions X

2008 Criteria for Inclusion of Conditions on NNC List and Categorizing as Immediate/Routine X

2009 Core Data Elements for Reporting X

2009 Implementation of ELR X

2010 Modification of Process for Recommending Conditions for National Surveillance X

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

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

“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

Responses to a Denver Pre-Meeting Survey

Three major categories:

• How to revise the Blueprint

• Governance of Surveillance

• Technology Aspects of Surveillance

Focus of Denver Workshop Discussions

• What needs revising in the Blueprint?• Governance of Surveillance• Technology Aspects of Surveillance• Local and Big City Issues

How to revise the BlueprintRe. 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…”

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

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.”

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

Possible Organization of a New Strategy Paper(based on Denver input)

I. IntroductionII. 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

SurveillanceIV. Public health’s response to the changing surveillance landscapeV. A Vision of the Future Potential for SurveillanceVI. Updated Guiding Principles for Public Health SurveillanceVII. RecommendationsVIII. References

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

Discussion

Issues Needing Further Discussion

• The NPHSS• Process for making surveillance policy

decisions• Incorporating various surveillance domains

and strategies into the NPHSS concept• Data issues