Mandatory Reporting of Diseases and Conditions by Health Care Professionals and Laboratories FREE

Public health surveillance is defined as the ongoing and systematic collection, analysis, and interpretation of outcome-specific data for use in the planning, implementation, and evaluation of public health practice. A surveillance system includes the functional capacity for data collection and analysis as well as the timely dissemination of these data to persons who can undertake effective prevention and control activities.¹ Public health surveillance systems in the United States were designed for the reporting of infectious diseases of public health interest, and health care professionals (usually physicians and nurses) have been the primary source of disease reporting.^2- 4 Recently, laboratories have also become an important source of reporting for public health surveillance.^5- 7 Together, health care provider reporting and laboratory reporting may ensure more complete and timely reporting for diseases and conditions recommended to be under national surveillance.

The list of diseases and conditions that are recommended for national surveillance is designed to reflect the current needs and priorities for public health surveillance at any given time. Table 1 shows selected changes in the list of diseases under national surveillance that occurred between 1989 and 1996, illustrating the dynamic nature of the list of diseases under national surveillance. Public health officials at state health departments and the Centers for Disease Control and Prevention (CDC) collaborate in determining which diseases should be under national surveillance; the Council of State and Territorial Epidemiologists (CSTE), in conjunction with CDC, makes annual recommendations for additions and deletions to the list of diseases under national surveillance.^2,8 For example, in 1994, CSTE recommended that 10 diseases or conditions be deleted from the list of diseases or conditions under national surveillance^2,9; in addition, 9 diseases or conditions were added ( Table 1). In 1995 and 1996, CSTE and CDC again responded to changes in public health priorities and expanded the list of diseases and conditions under national surveillance beyond the traditional list of infectious diseases, recommending that elevated blood lead levels,¹⁰ silicosis,¹¹ tobacco use,¹² and acute pesticide poisoning¹³ be added.

The list of diseases and conditions under national surveillance is published each year in the annual MMWR Summary of Notifiable Diseases ⁸; however, the list of what is reportable within each state or territory may vary.^3,5,8 This article describes the state and territorial public health reporting requirements for health care professionals and laboratories for those diseases and conditions that are recommended for national surveillance.

In May 1997, a survey questionnaire was mailed to the individual at each state or territorial health department designated the state epidemiologist. (New York City is bound by New York State reporting requirements, but, as is true with other local areas, may have additional reporting requirements. New York City was included in the survey because its population is greater than that of many states.) Responses were received between May and August 1997. States and territories that did not initially complete the survey received follow-up telephone calls requesting their participation in the survey. The results of the survey were subsequently reviewed by the state and territorial epidemiologists and updated to reflect reporting requirements current as of January 1, 1999.

Each of the 52 infectious diseases and 4 conditions (acute pesticide poisoning, silicosis, elevated blood lead levels, tobacco use) recommended by CSTE and CDC for national surveillance was included as a single response item on the survey, with 4 exceptions: (1) Hepatitis C/non-A, non-B on the national list was separated into hepatitis C and hepatitis non-A, non-B on the survey. (2) Adult human immunodeficiency virus infection was included, in addition to pediatric human immunodeficiency virus infection. (3) Streptococcus pneumoniae, drug-resistant invasive disease (from the national list) was separated into 2 categories, S pneumoniae-invasive and S pneumoniae–drug-resistant. (4) Surveillance for tobacco use does not rely on reporting by health care professionals or laboratories and therefore was not included in this survey. For laboratory reporting, epidemiologists were to consider any specific laboratory test indicative of the disease or condition.

In addition to the diseases and conditions under national public health surveillance, 84 others also were included on the survey to assess as completely as possible the reporting requirements for any diseases and conditions that may have had local or state public health importance. Respondents were also asked to write in any additional diseases or conditions for which their state or territory had mandated reporting. Respondents were asked to indicate whether each disease or condition was reportable by health care provider, laboratory, both provider and laboratory, or neither provider nor laboratory. For diseases or conditions included on the survey that were considered by the state to be reportable but under some other name or heading (eg, Eastern equine encephalitis, reportable in the category of "Encephalitis, all types"), the disease or condition was coded by the authors as reportable for that state, although the specific term or name given on the survey was not the same as that used for reporting in the state or territory.

Epidemiologists from each of the 50 states and from New York City, Puerto Rico, and Guam responded to the survey (100% response rate for US states and 90% overall, including the territories). Table 2 displays the state and territorial requirements for reporting of diseases and conditions recommended for national surveillance as of January 1, 1999, and shows conditions and diseases reportable only by health care provider, those reportable by laboratory only, those reportable by both health care provider and laboratory, and those for which neither the health care provider nor laboratory are required to report.

Table 3 summarizes the reporting requirements for each of the diseases and conditions under national surveillance. Of the 58 diseases and conditions recommended for national reporting, 35 (60%) were reportable in greater than 90% of the states and territories, 15 (26%) were reportable in 75% to 90% of the states and territories, and 8 (14%) were reportable in less than 75% of the states and territories. Nineteen of the infectious diseases (acquired immunodeficiency syndrome, botulism, cholera, diphtheria, gonorrhea, hepatitis A, hepatitis B, malaria, measles, pertussis, poliomyelitis [paralytic], human rabies, rubella, salmonella, shigella, syphilis, tetanus, tuberculosis, and typhoid fever) were reportable in all of the states and territories that responded to this survey.

The information presented in Table 2 is also available on the Internet (http://www.cste.org). However, public health reporting requirements change often; readers should contact their public health departments for the most current information on reporting requirements. The reporting requirements for diseases and conditions that are not under national surveillance but for which at least 10 states or territories mandated reporting by health care professionals, laboratories, or both are not included in this article but are available online (http://www.cste.org).

Several factors may affect whether a disease or condition on the list for national surveillance is reportable within a specific state or territory at any given time. In this survey, only 19 (33%) of the 58 diseases and conditions on the list for national surveillance were actually reportable in each of the 53 responding states and territories. Time needed to enact a requirement, available resources, and competing public health priorities each affect a state's list of reportable diseases and conditions.

Recent additions to the national list may only be reportable in fewer states if there has been insufficient time for the legislative and other processes needed within the state to make the disease or condition reportable by law, statute, or regulation. For example, acute pesticide poisoning (reportable in 20 [38%] states and territories) and silicosis (reportable in 24 [45%] states and territories) were added to the national list relatively recently (1996). In addition, surveillance data may be difficult to capture, and the state or territory may not have the resources to implement reporting programs or systems for that disease or condition. The relatively low level of mandatory reporting for drug-resistant S pneumoniae (reportable in 28 [53%] states and territories), may illustrate the reluctance of states and territories to require reporting for diseases and conditions for which surveillance data (eg, antimicrobial susceptibility patterns) are difficult to capture. Also, not all diseases and conditions on the list for national surveillance have equal relevance to each state or territory, and reporting requirements for these diseases and conditions may be affected by regional or other factors. For example, hantavirus and coccidioidomycosis are reportable in only 34 (64%) and 10 (19%) of the states and territories, respectively, because these conditions usually cause public health problems only in certain regions of the United States.

In the United States, the authority to require notification of cases of diseases resides in the respective state legislatures.¹⁴ The states exercise their authority to require reporting by enacting legislation; some state statutes delegate the authority to enumerate the health conditions that are reportable to state or local agencies. Subsequent reporting of morbidity data by the state or territorial health department to CDC is voluntary.^3- 4

Because of each state's autonomy with regard to morbidity reporting, the list of diseases and conditions that are reported varies by state. In addition to the variation among states for the conditions and diseases to be reported, the time frames for reporting, agencies receiving reports, persons required to report, and conditions under which reports are required also may differ among states.³ In many states, local health departments provide epidemiologic services; as a consequence, health care professionals in many states are encouraged by their public health officials to report diseases directly to local health departments rather than to the state health department. Health care professionals are encouraged to determine the specific requirements in their area by contacting their state health department.

Standardized case definitions for the diseases under national surveillance have been created to provide uniform criteria for reporting cases.^15- 16 Although the public health case definitions are useful for surveillance, they are not designed to influence clinical treatment or to delay the reporting of pending case confirmation. Case definitions for the diseases under national surveillance were first developed and approved by CDC and CSTE in 1989 and were published in the MMWR Morbidity and Mortality Weekly Report in 1990.¹⁵ The most recent revisions to the case definitions were published in 1997¹⁶ (available at http://www.cdc.gov/epo/phs.htm). The CDC and CSTE also have initiated development of standardized case definitions for injury, chronic, environmental, occupational, and other health conditions.

Historically in the United States, infectious disease surveillance has relied primarily on case reports from physicians and other health care professionals. Although these diseases are usually underreported (reporting is estimated at 6%-90% for many of the diseases under national surveillance),^14,17 if the reporting is consistent over time, these data are a good source of temporal and geographic trends and characteristics of the persons experiencing morbidity.¹⁸ For diseases or other health conditions for which there is a substantial laboratory component included in case diagnosis or definition, laboratory reporting is a useful mechanism to supplement reporting from physicians.¹⁹

Although reporting by clinicians to public health authorities allows immediate public health response, including case investigation, contact prophylaxis, and outbreak control, other methods of surveillance are also necessary to meet the changing needs of public health assessment. Some of these other methods are sentinel surveillance and secondary analysis of hospital discharge or other administrative data sets, prevalence surveys, and vital records. These methods may be used in combination to improve the comprehensiveness of data collection and to provide more complete information to assess local, state, or national goals for public health.^14,20 In 1994, CSTE and CDC convened a national surveillance meeting to formalize the concept of a comprehensive framework for surveillance to include infectious as well as noninfectious health conditions, and CSTE proposed the concept of the National Public Health Surveillance System.¹⁸

The CDC coordinates the states' and territories' surveillance data, providing weekly reports in the MMWR Morbidity and Mortality Weekly Report and annually in the MMWR Summary of Notifiable Diseases, which are available on the Internet (http://www.cdc.gov/epo/mmwr/mmwr.html ). In addition, many states and territories provide newsletters and epidemiologic updates of surveillance data within their jurisdictions. Surveillance summaries for injury,^21- 22 hazardous substances and emergency events,²³ infant mortality,^24- 25 childhood lead poisonings,²⁶ low birth weight,²⁴ neural tube defects,²⁷ occupational asthma,²⁸ occupational hazards,²⁹ silicosis,^30- 31 and smoking^28,32- 33 illustrate that other mechanisms for surveillance and data collection must be flexible and appropriate to the specific public health issue.

Public health surveillance forms the basis for establishing public health priorities and monitoring trends.³⁴ Health care professionals are key to public health efforts. By describing the reporting requirements for various diseases and conditions, the CSTE survey provides information on state and national priorities for surveillance. At the local level, knowledge of surveillance priorities can help ensure that diseases and conditions of public health concern are investigated, that appropriate public health action is taken, and that the disease or condition is reported to the appropriate public health authority. At the state level, surveillance data can be summarized and communicated to the private and public sectors to identify needed interventions and to assess programs. Awareness of state-specific priorities and requirements for surveillance is essential, because authority for reporting resides in each state. At the national level, surveillance data are used to guide policy and to evaluate programs.

Public health has expanded from its traditional base in infectious disease control, and as the scope of public health expands, the list of diseases and conditions of public health interest will vary between jurisdictions and over time. In the future, greater emphasis should be placed on gathering data electronically from existing sources, including clinical laboratories and computerized medical records. Those concerned about public health will increasingly be required to make the best use of limited resources for surveillance to meet the challenges of a changing medical care system using new information technology.