Sexually Transmitted Diseases  >  Program Guidelines  >  Surveillance and Data Management

Program Operations Guidelines for STD Prevention
Surveillance and Data Management

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Sections on this page:

• DATA MANAGEMENT
• Central Registry
• Information system design
• Information system capacity
• Privacy and data security

DATA MANAGEMENT

Central Registry

The central registry is the administrative heart of a surveillance system. The efficiency of its operation determines whether a surveillance activity is an asset or a liability to the efficiency and effectiveness of disease intervention, prevention, and outreach activities. How well the central registry operates is determined by the performance of the staff, machinery used, and the procedures selected to guide the operation. Their selection, training, and supervision, along with periodic quality assurance review of performance and operations are major management responsibilities. Regardless of whether the central registry is manual, mechanical, or computerized, all systems will depend on human judgment for final decisions regarding program operations.

Information System Design

Persons responsible for designing STD surveillance systems should be familiar with current information technologies and aware of issues in health information system development, including ongoing efforts to develop standards, (e.g., data standardization issues related to the Health Insurance Portability and Accountability Act of 1996 and the Health Plan Employer Data Information Set (HEDIS) performance measures). Key steps in designing surveillance information systems are as follows:

• Analysis of existing systems
  • What tasks should the system support
  • Current system inputs and outputs
  • Strengths and weaknesses of current information system
  • Hardware and software support
  • Cost of current system
• Interfacing with other management information systems
• Analysis of system requirements
  • Define program goals and functions in relation to information systems support
  • Define user needs
  • Define resource constraints

• Redesign of information system
  • Analyze existing user operations and unmet needs for matching and extending systems development
  • Consider simplification (e.g., deletion, consolidation, redistribution), integration with other information systems, automation, procedure changes, and database changes
• System selection
  • Develop selection criteria for hardware, software, and connectivity
• Implementation
  • Develop implementation plan, including procurement, training, and conversion
  • Develop evaluation plan to measure system performance and other user criteria before and after implementation
• System testing, evaluation, and documentation
  • Test system performance
  • Conduct ongoing assessment of quality control
  • Formally document redesign process, including operational characteristics, information flow, implementation plan, resources, and operating instructions.

The following items should also be considered in information system design.

• STD prevention programs (in collaboration with other health department components) should involve public health practitioners, health care providers, epidemiologists, and laboratorians in information system development. Information system technical experts cannot design adequate systems without their input.
• The system that is developed should allow the interchange of data between case interviews, partner services, STD clinic diagnosis and treatment, laboratory data, pharmacy data, and medical billing/administrative data systems. Any person in the STD care team, from clinician to DIS to laboratorian to support staff should be able to access the data in the clinical setting. For reported STD surveillance data, only health department staff should have access to the data.
• Automation should be the norm for most information management systems. However, in a low morbidity setting at the level of a small local health department, a paper record system may be an efficient data-management scheme. Once data used by STD prevention programs are entered into an electronic medium, every effort should be made to maintain those data electronically rather than duplicating data entry efforts at various points within the system.
• Familiarity with industry standards for data transmission and linkage is necessary for developing interfaces between clinical, laboratory, pharmacy, administrative, and health department systems, and for developing methods of transferring data between different systems.

Information System Capacity

In the past, handwritten or computer-generated paper reports were used for transferring information from the laboratory to the health care provider and to the public health system. With computerization of laboratories, it has become possible for laboratories to send reportable data to health departments electronically. Over the past few years, substantial work in the public and private sector has led to greater understanding of laboratory information systems and their potential contribution to public health surveillance.

Information systems that were initially designed for reporting positive test results may have insufficient capacity to manage the large volume of data on persons testing negative. New electronic data systems that are designed to report data on positives should also be able to report the same data elements on negatives (such as in the non-name section of STD*MIS).

While substantial development of electronic laboratory reporting protocols has taken place, it is recognized that some data elements essential for disease control and surveillance will not be available from laboratory information systems. Therefore, STD prevention programs should transfer the lessons learned regarding data standards, data transmission protocols, and data linkage from laboratory reporting activities to other potential sources of electronic data, including provider information systems, pharmacy information systems, hospital information systems, insurance and health plan information systems, and vital records.

To encourage electronic reporting from providers, STD prevention programs might initially focus on the improvement of reporting within the health system itself—are public health clinics electronically reporting surveillance and disease control information? If not, what will it take? Are the data already available in other computerized databases? As part of an overall strategy, STD prevention programs should identify the types of data that may be available from other information systems instead of creating parallel systems or duplicating systems.

Assessment, policy development, and assurance are core public health functions. Each of these functions is enhanced and facilitated by effective information systems that allow public health agencies to collect data to improve decision-making, to retrieve and use data for identifying and solving health problems and for planning and evaluating interventions, and to assure the effectiveness, accessibility, and quality of personal and population- based health services. STD prevention program staff need to have the appropriate skills to use information technologies to perform the core public health functions and should have access to an electronic network that provides access to federal, state, and local information systems.

Public health agencies must ensure that appropriate staff training and career development opportunities are available to support their information needs, which are likely to increase in the future. STD prevention program staff may benefit from activities and training intended to increase their ability to use data effectively, such as informatics training, CDC-sponsored epidemiology courses, applied EpiInfo, and other computer or database training courses.

The business community's paradigm for information management has been established over a number of years and can be considered to be based on business's need to monitor costs relative to benefits in order to maximize "value." The health care industry has used information technologies to support financial processing and to improve their care delivery processes by efficiently managing diagnostic, therapeutic, and patient management data. The public health community must identify the similarities and differences between its information needs and those of other participants in the health care system. Proactive information management is important for effective STD prevention program efforts, and to develop and implement an information technology plan to meet STD prevention program goals more efficiently.

Public health's need to monitor the health of populations and preventive health services in the community must be accommodated by private sector information systems that may have an individual focus and that may emphasize medical treatment of an existing condition rather than preventive health services. The public health community must articulate the benefits of information systems that facilitate both clinical care improvement and population-based health assessment. Informatics fellowships or informatics graduate program externships with public health agencies may provide opportunities for development of information systems which support essential public health functions.

Privacy and Data Security

STD prevention programs must establish comprehensive data security policies for the following purposes:

• to ensure the confidentiality of disease control data and the privacy of individuals (prevention of unauthorized disclosure of information);
• to ensure the integrity of disease control data (prevention of unauthorized modification of information); and
• to ensure the availability of disease control data to authorized persons (prevention of unauthorized or unintended withholding of information or resources).

Privacy of the information collected during public health program activities is necessary because of significant economic, psychological, and social harm that can come to individuals when personal health and behavioral information is disclosed. Forty-nine states have some statutory protection for governmentally maintained health data for public health information in general. Forty-three states have protections for data related to STDs. Data security policies must be developed in compliance with state and local statutes regarding privacy protection of public health information. For more detailed information on the Model STD Information System (MSIS), contact the Division of STD Prevention, Statistics and Data Management Branch, CDC.

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