North American Association of Central Cancer Registries (NAACCR)

• Standard record layout and edit protocols for exchange of registry data;

• HL-7 message format standards for clinical information;

• Terminology standards including a data dictionary, use of LOINC codes, evaluation of SNOMED; and

• Standards for completeness, quality, management and analysis of data.

The Health Care Service: Data Reporting Guide

HIPAA names specific implementation guides to provide the compliance details. These implementation guides specify the data elements required, definitions of data elements, technical transactions for transmission of the data, named external code sources, acceptable internal code values, as well as usage notes for each data element.(4)

While public health is not mandated under HIPAA to adopt standards for electronic health care transactions, except as payers and providers, the Public Health Data Standards Consortium (PHDSC) member organizations agreed that it made good sense adopting the same standards as named in HIPAA, where appropriate. (See Module 6 for the rationale for moving to standards in public health.) In cooperation with the Standards Development Organizations (SDOs) and the Data Content Committees (DCCs) named in HIPAA, the Consortium developed an implementation guide for public health reporting of health encounters. “The Health Care Service: Data Reporting Guide” uses a subset of the same standard (837) used by HIPAA covered entities to submit health care encounters and health claims. This implementation guide includes data elements beyond those that are necessary for billing purposes, which are designated in the implementation guides named in the HIPAA Transactions and Codes Final Rule. It is the first national implementation guide that specifically addresses the information needs of public health for encounter data, including specifications for data elements such as race and ethnicity, county codes, and a limited set of clinical data elements.

The Health Care Service: Data Reporting Guide primarily uses the UB data content standards maintained by the National Uniform Billing Committee (NUBC).

The New York State discharge data system (SPARCS) utilized this guide in the development of their state mandated emergency department data collection system. System design documentation based on the "Health Care Service: Data Reporting Guide" is available on the SPARCS Web site.

Public Health Information Network (PHIN)*

• Detection and monitoring supports disease and threat tracking as well as national health status indicators.

• Data analysis facilitates real-time evaluation of live data feeds transforming data into useful information for partners at all levels of public health.

• Information resources and knowledge management provides reference resources, distance learning and decision support.

• Alerting and communications platforms transmit emergency alerts, routine professional discussions and collaborative activities.

• Response provides management support around guidelines, recommendations, vaccination, etc.

Creating a strong network that continues to define shared data standards to support the exchange of key health data is critical for a more effective and response-oriented public health system. The Public Health Information Network will serve as the framework supporting this new system, a system better positioned to respond to the changing needs of public health and consequently the nation.

Currently there are multiple systems in place that support communications for public health labs, the clinical community, and state and local health departments. Each has demonstrated the importance of being able to exchange health information. However, many of these systems operate in isolation, not capitalizing on the potential for a cross-fertilization of data exchange. The Public Health Information Network seeks to leverage those systems and capitalize on that potential.

* Information about the Public Health Information Network was provided via electronic mail by John Teeter, Associate Director, Information Technology Architecture, Information Resources Management Office, Centers for Disease Control and Prevention. February 26, 2003.

Health Alert Network

In many states and localities, while HAN began as an infrastructure to increase agency preparedness to respond to a public health emergency, it has evolved into an integrated information and communications system platform for all day to day operations and programs. For example, national disease surveillance and electronic laboratory reporting (through NEDSS) runs on the HAN platform.

• All 50 state health agencies, the District of Columbia;

• Eight territories;

• Two-thirds of the nation’s counties;

• Health organizations and major hospital networks;

• Three metropolitan health departments (Chicago, County of Los Angeles Department of Health Services, and New York City);

• Five local exemplar centers for public health preparedness (DeKalb County Board of Health, Georgia; Monroe County Health Department, New York; and Denver Health/Denver Public Health, Colorado; Westchester County Health Department, New York; Lawrence Douglas County, Kansas); and

• Fourteen academic and seven specialty academic centers for public health preparedness.(8, 9)

With the inauguration of the Public Health Information Network (PHIN) in 2003 by CDC PHIN serves as the umbrella for the Health Alert Network (HAN), one of its many systems working to achieve the goal of an integrated public health system.

National Electronic Disease Surveillance System (NEDSS) Initiative

The NEDSS System Architecture electronically integrates and links together several types of surveillance systems with the use of standard data formats; a communications infrastructure built on principles of public health informatics; and agreements on data access, sharing and confidentiality.(12) The Public Health Conceptual Data Model (PHCDM) is a major component of the NEDSS data architecture standards. The purpose of PHCDM is to document information needs of public health so that the CDC, in collaboration with state and local health departments, can establish data standards for public health, collaborate with national health informatics standards setting bodies to define standards for exchange of information, and construct computerized systems that conform to established standards for use in the management of data relevant to public health.(13)

Data expressions are further defined in the Public Health Logical Data Model which provides guidance on how the data concepts captured in the Public Health Conceptual Data Model can be implemented.

NEDSS is based on the following principles:

• Utilization of industry standards;

• Reliance on off-the-shelf software;

• Internet-based secure transmission of data;

• A common "look and feel" of systems;

• Common reporting requirements; and

• No requirement for specific software use.(14)

NEDSS System Architecture is designed to integrate and replace several current CDC surveillance systems, including the National Electronic Telecommunications System for Surveillance (NETSS), the HIV/AIDS reporting system, the vaccine preventable diseases and systems for tuberculosis (TB) and infectious diseases.(15)

The NEDSS Base System is a complete implementation of the NEDSS architecture and standards that is made available to states as an operational system. It is a modular platform that can be customized to meet state and program area data needs as well as provide a secure, accurate and efficient way for collecting and processing data needed at the national level.(16) Currently the modules are designed to provide functionality for surveillance purposes. In the future, the NEDSS Base System will be expanded to include modules that support common public health functions beyond surveillance. The NEDSS Base System is developed by an experienced software engineering company, Computer Sciences Corporation (CSC), in consultation with the CDC and state partners.

Both NEDSS and the NEDSS Base System have electronic laboratory reporting (ELR) functionality. ELR is designed to provide secure, automated and electronic communication for reportable conditions between participating state departments of health, the CDC, and external NEDSS trading partners using national standards for electronic messaging.(17) ELR reduces the reporting burden for clinical laboratories and minimizes data entry for public health.

• Multiple, incompatible, disease specific systems that currently exist;
• Incomplete, inconsistently expressed and delayed data;
• Burden on health care system to report disease;
• Overwhelming volume of data to be managed by health departments; and
• Lack of state-of-the-art information technology.

NEDSS will revolutionize public health by gathering and analyzing information quickly and accurately. NEDSS will help to improve the nation's ability to identify and track emerging infectious diseases and potential bioterrorism attacks as well as to investigate outbreaks and monitor disease trends.(19)

• Uniform data capture standards;

• Message format standards (e.g., HL-7) for electronic data interchange (EDI) of disease surveillance and laboratory data; XML data exchange;

• Terminology standards (e.g., LOINC, SNOMED)

• Security standards.