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Abstract

Keywords

public health surveillance mental health substance-related disorders behavioral science Substance Abuse and Mental Health Services Administration

Public health surveillance is the systematic reporting of cases of diseases to monitor trends in their incidence and prevalence, detect irregularities in these trends, suggest hypotheses for research, and guide the implementation and evaluation of interventions.¹ For most of its history, public health surveillance has focused on infectious diseases,² but in recent decades, it has been expanded to other areas of health, such as chronic diseases and environmental and occupational hazards.^3

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Recently, public health practitioners concerned with mental illness and substance abuse began to apply surveillance principles to behavioral health.⁷ The Substance Abuse and Mental Health Services Administration (SAMHSA) defines behavioral health as

mental/emotional well-being and/or actions that affect wellness. Behavioral health problems include substance use disorders; alcohol and drug addiction; and serious psychological distress, suicide, and mental disorders. Problems that range from unhealthy stress or subclinical conditions to diagnosable and treatable diseases such as serious mental illnesses and substance use disorders are included.⁸

In this article, we examine this more recent application of public health surveillance to behavioral health. We review the limitations of this application, identify the necessary elements of an effective surveillance system, and recommend pilot indicators and sources of data for behavioral health surveillance.

Surveillance of Behavioral Health Cases

In the United States, as mortality rates for many diseases have decreased, the rates of suicide, drug abuse, and chronic liver disease have increased,⁹ although some groups have been disproportionately affected.¹⁰ In 2015, 43.4 million adults—17.9% of all US adults—had one form of mental illness in the past year.¹¹ The burden of behavioral health disorders has increased, despite increasing evidence of effective prevention and intervention strategies.¹²

Behavioral health surveillance is not as developed as that for infectious, chronic, and environmental diseases, and this lack of data has hindered improving policy, legislation, and resource allocation.¹³ Many state and local health departments do not have a behavioral health component, and among those that do, it is often located in a separate agency with separate lines of authority.¹⁴ This separation interferes with sharing data with public health providers, limits monitoring and evaluating interventions, and perpetuates the compartmentalization of behavioral health activities. In addition, some behavioral health surveillance data are collected for other purposes (eg, surveys, registries), which means their timeliness is determined not by the needs of behavioral health but by the needs of the primary purpose of data collection. Finally, ethical issues in collecting behavioral health data raise special concerns. Breaches in the confidentiality of personal data and the resulting stigma can result in unjust and unequal treatment. Behavioral surveillance data may need special safeguards to balance the needs of public health monitoring against the need to protect privacy.

Necessary Elements of Behavioral Health Surveillance

As in the surveillance for infectious and environmental conditions, surveillance for behavioral health requires a clear statement of objectives, effective interpretation and dissemination of surveillance findings, and good evaluation. If the data collected cannot inform prevention and treatment, they should not be collected at all, and the links to public health action should be documented when the system is established.

The main objective of behavioral health surveillance is similar to that for infectious and environmental conditions: providing local measurements of prevalence, incidence, severity, risk factors, social determinants, functional outcomes, and access to care. Collected data should be fed back to local public health agencies to inform public health programs, assessments, and responses. Case definitions must be carefully defined, data sources need to be appropriate and reliable, and the reporting frequency, mechanisms, analysis, dissemination, and evaluation of these data need to be determined. The underlying science of public health surveillance has long benefited from published surveillance guidelines, including guidelines for establishing surveillance systems,⁴ evaluating system attributes,¹⁵ and analyzing and disseminating data.¹⁶

Several challenges to implementing behavioral health surveillance have been identified, for example, the need for mental health surveillance during disasters.¹⁷ We expand on these challenges and call for the development of a national behavioral health surveillance system that would provide timely, ongoing, local surveillance data on a broad range of behavioral health conditions.

Case Definitions

Case definitions for public health surveillance answer the question “who or what is counted” and guide follow-up and evaluation activities by describing the target group in measurable terms. Such definitions have components of time, place, person or behavior, exposure, and diagnosis. When developing definitions, reliability should be balanced with simplicity of application.¹⁸ For example, because the number of reported cases of suicidal ideation or attempts might increase during a widely publicized cluster of suicide attempts, the case definition must reliably address false positives. Also, having 3 medical experts evaluate each reported case by extensively reviewing medical records and interviewing each potential case for evidence of suicidal ideation or attempts would produce a highly reliable case definition but would likely be prohibitively expensive and too slow for ongoing surveillance. Furthermore, specifying the time component of the case definition is complicated by the fact that many behavioral conditions may be misdiagnosed or evolve over long periods.

Data Sources

Many data on behavioral health conditions are already being collected, albeit without standardized case definitions or reporting periods, by various agencies and lines of authority, and often for reasons other than surveillance. We consider 6 data systems currently in use: case reporting, surveys, medical records, registries, mortality data, and syndromic surveillance systems.

Case reporting

Historically, successful surveillance in the United States has depended on collaboration between state and federal governments. For example, for infectious diseases, the National Notifiable Diseases Surveillance System is operated in conjunction with the Council of State and Territorial Epidemiologists.¹⁹ An example of an early adaptation to expand this disease surveillance system to include behaviors is the Centers for Disease Control and Prevention’s (CDC’s) National HIV Behavioral Surveillance system. This system conducts surveillance among populations at high risk of HIV infection, including sexually active men who have sex with men, people who inject drugs, and high-risk heterosexuals.²⁰

Although case reporting requires a diagnosis by a health care provider, such a requirement might be limited in behavioral health. For infectious diseases, the system is regulated by states and so may vary among states. Compliance with reporting requirements also varies at the state and local levels, as does completeness of case ascertainment. Finally, restrictions about disclosure and use of patient records that include information on suicidal ideation or substance use diagnoses and services might discourage providers from reporting these conditions.²¹

Surveys

In decades past, surveys were considered somewhat distinct from surveillance. Differences included lack of continuity in collection and timeliness of surveys. Furthermore, surveys fundamentally are designed to be generalizable, whereas surveillance seeks the complete universe of cases. Finally, surveys are not designed to detect aberrations, nor are they adept at modifications to respond to emerging issues.²² However, as surveillance evolved beyond reporting cases of infectious diseases, repeated or continuous surveys came into use.³ In the Behavioral Risk Factor Surveillance System, data on chronic health conditions, health-related risk behaviors, and use of preventive services have been collected through telephone surveys since 1984.²³ The survey contains questions on alcohol and tobacco use, “recent mentally unhealthy days” (ie, unhealthy days during the past 30 days), anxiety and depressive disorders, and psychological distress. The Youth Risk Behavior Surveillance System monitors the health risk behaviors that contribute to leading causes of death, disability, and social problems among young people in the United States.²⁴ The survey contains questions on alcohol and other drug use.²⁵ Although data from these 2 surveys are useful for behavioral health, they are of limited usefulness because the data are available only annually, might not be available for a geographic area in a state, and are subject to self-report bias. In addition, the competition for space on these surveys makes adapting them to emerging trends in behavioral health relatively difficult.

The National Health and Nutrition Examination Survey (NHANES) has monitored the health and nutritional status of a representative sample of adults and children in the United States with interviews and physical examinations since the 1960s and was modified in 1999 to meet new needs.²⁶ NHANES has the advantage of including physical examination data on medical and behavioral conditions, symptoms, concerns associated with mental health and substance abuse, and the use and needs of mental health services. However, as with the Behavioral Risk Factor Surveillance System, its limitations include a lack of timeliness and a limited ability to incorporate changes.

Other national surveys offer data that are helpful for behavioral surveillance. The National Hospital Care Survey integrates data from the National Hospital Discharge Survey, the National Hospital Ambulatory Medical Care Survey, and the Drug Abuse Warning Network.²⁷ Data from the National Hospital Care Survey have been used to assess drug use.²⁸

The National Health Interview Survey monitors the health of the US civilian, noninstitutionalized population.²⁹ The survey contains a question related to mental health based on the Kessler nonspecific, psychological distress scale, which is a validated, population-based measure for evaluating distress that has good precision and strong and consistent psychometric properties.³⁰ The question has been used to evaluate mental distress among diverse and vulnerable populations.³¹

The National Survey on Drug Use and Health (NSDUH) collects data on the prevalence, patterns, and consequences of alcohol, tobacco, and illegal drug use and abuse, as well as mental disorders. Conducted by SAMHSA since 1971, the survey methodology was changed to computer-assisted interviews in 1999 to improve estimates based on minimum sample sizes per state and to include cigarette brand information.³²

All these surveys have important limitations for behavioral health surveillance. First, data are cross-sectional, limiting the types of analyses that can be done. Some data are available only for subgroups of participants in 2-year cycles, hindering examination of topics by age or analysis of trends. Many of the data are self-reported and so are subject to self-report and recall bias, potentially creating the need to adjust for these biases. Sampling limitations in the NHANES and NSDUH also do not allow for local community-based estimates. Furthermore, the time between collecting and reporting data (about 1 year for NHANES and 2 years for NSDUH) limits their usefulness in responding to emerging behavioral health issues. Finally, none of the CDC or SAMHSA surveys adequately measures anxiety disorders, and each defines mental health differently.

Medical records

Since 2009, electronic health records (EHRs) have provided real-time data on patient demographic characteristics, medical diagnoses, prescriptions, and laboratory test results. By 2015, 87% of office-based health care providers used an EHR system, up from 18% in 2001.³³ Data from EHRs might be more valid than self-reported data, and pooled EHR data across providers can permit comparisons across geographic regions and diverse populations, as well as longitudinal analyses.

Whether the clinical information in EHRs can provide all of the data needed for behavioral health surveillance is still undetermined. In addition, linking data from EHRs to other sources (eg, surveys) is difficult without access to personally identified EHR data that can be matched to survey responses, which may be difficult because of privacy protections for patient data and differences in file formats. In addition, although the accuracy of EHRs might be higher than surveys, they provide information on only the most severe cases of behavioral health conditions because these systems are driven by provider encounters, billing, and insurance reimbursements.

Disease registries

Disease registries track the care and outcomes of a defined patient population with certain chronic conditions. Examples include the National Program of Cancer Registries and the Surveillance, Epidemiology, and End Results program,³⁴ as well as registries for traumatic brain injury, immunization, hepatitis, HIV, and amyotrophic lateral sclerosis.⁶

Compared with other sources of surveillance data, registries provide more timely, complete, and often longitudinal data, allowing analysis of quality of care and estimates of population-based incidence. However, registry data may not be representative of the entire population³⁴ because of variations among locations or inclusion criteria.³⁵ Registries may also not record the comorbidities important in assessing behavioral outcomes.³⁶ The use of registry data may raise privacy and confidentiality concerns³⁷ because anonymity can be compromised by record linkages. Finally, registries require more resources than do other data sources, given the cost of follow-up.

Mortality data

The National Vital Statistics System, which provides data on mortality, is a fundamental source of demographic, geographic, and cause-of-death information in the United States and is one of the few sources of health-related data that can be compared among small geographic areas spanning long periods. The data are also used to identify the characteristics of deceased people, determine life expectancy, and compare mortality trends with other countries. This system is useful for surveilling cases in which a behavioral health problem is mentioned as a cause of death. However, data from mortality systems may not be available soon enough to use in public health interventions, and some causes of death may be misclassified.^38,39 For example, most suicide attempts do not result in death, which limits the utility of mortality data for measuring suicide attempts. Death investigation protocols vary by location. Medical examiners, coroners, physicians, and public safety professionals also might not record a death as a suicide to spare the victim and the family the social stigma sometimes associated with suicide or to avoid other consequences, such as denying insurance benefits to the victim’s family.⁴⁰

Syndromic surveillance

Efforts to detect bioterrorism events as early as possible have expanded traditional surveillance efforts into syndromic surveillance. The objective of this type of surveillance is to identify clusters of health events early, before the diagnoses are confirmed and reported to public health agencies, and to mobilize a rapid response to reduce morbidity and mortality.⁴¹ A syndromic surveillance system that captures data on suicide-related emergency department visits can assess the contribution to the burden of suicide in the United States, given the lack of timely data on suicidal ideation.⁴²

Frequency of Dissemination

The frequency of disseminating behavioral surveillance data should be informed by their intended use. Timing should contribute to the objective of surveillance, be acceptable to all participants, and be adhered to, even when the number of cases is zero. Several years of data might be needed to establish baselines and robust error rates and to distinguish important aberrant events and trends justifying public health intervention. For behavioral health, data should be timely enough to enable rapid response to an unusual cluster, say, of suicide or illicit drug use. The data should be able to measure trends and to evaluate interventions and prevention activities.

Mechanisms for Reporting, Analysis, and Dissemination

Mechanisms for surveillance data reporting, analysis, and dissemination include how data move from the source, through all stakeholders (eg, data collection agencies, data users), and to a national agency for aggregation. For the National Notifiable Diseases Surveillance System, health care providers (including laboratories) transmit reports of notifiable conditions to their local and then state health departments (the time frames are specified in standard case definitions). Weekly reports are transmitted to CDC through the National Electronic Disease Surveillance System,⁴³ which allows data providers to customize analyses and reports to meet local public health priorities. National analyses include weekly aggregate numbers,⁴⁴ annual summaries,⁴⁵ and more detailed analysis by individual disease programs.⁴⁶ Reporting mechanisms, analytical frameworks, and dissemination plans are determined collaboratively by all participants, in part to ensure that appropriate technical assistance is available.

Evaluating Behavioral Health Surveillance

Surveillance is designed to contribute to the public good and requires public resources; therefore, evaluation is required to ensure that resources are being used effectively. CDC’s guidelines for evaluating surveillance systems¹⁵ provide a structure based on several system attributes: simplicity, flexibility, data quality, acceptability, sensitivity, positive predictive value, representativeness, timeliness, and stability. These attributes might need to be modified for behavioral surveillance systems. For example, laboratory confirmation is not an option for most behavioral health problems, and a reference standard for validating individuals’ responses to questions on suicidal ideation might not exist. In response to these issues, in 2016, a group of public health researchers recommended updates to the attributes for evaluating behavioral surveillance systems.⁴⁷

Consensus Indicators for Behavioral Health

In response to the issues presented here, the Council of State and Territorial Epidemiologists’ Workgroup for Substance Abuse and Mental Health Surveillance selected and defined key indicators and case definitions for surveilling substance abuse and mental health (Box),⁴⁸ which were approved by representatives of state health departments at the council’s 2016 meeting. Using accepted criteria for deciding whether a condition should be placed under public health surveillance, mortality data (death certificates), hospital discharge and emergency department data, data from the Behavioral Risk Factor Surveillance System and the Youth Risk Behavior Surveillance System, prescription drug sales (opioids), state excise taxes for alcohol, data from the Fatality Analysis Reporting System (maintained by the National Highway Traffic Safety Administration), and data from NSDUH, if collected routinely by all 50 states and reported to a national repository, would create a national surveillance system for behavioral health.

Box

Surveillance indicators for substance abuse and mental health recommended by the Council of State and Territorial Epidemiologists, 2016^a

Alcohol

Prevalence of adult binge drinking

Prevalence of binge drinking among young people

Alcohol-related motor vehicle crash death rate

Liver disease and cirrhosis death rate

State excise taxes on alcohol (3 subindicators for beer, wine, and spirits)

Other drugs

Drug overdose mortality rate

Hospitalization rate associated with all drugs, methods A and B^b (7 subindicators for specific drugs)

Prescription opioid sales per capita

Prevalence of dependence on or abuse of drugs or alcohol in the last year—summary

Prevalence of use of selected prescription and illicit drugs (6 subindicators for specific drugs)

Mental health

Suicide death rate

Hospital discharge rate for mental disorders (4 subindicators for specific disorders)

Emergency department visit rate for intentional self-harm

Rate of past-year suicide attempts among young people

Prevalence of past-year major depressive episodes

Prevalence of past-year serious mental illness

Prevalence of past-year any mental illness

Prevalence of frequent mental distress (≥14 days of 30 days)

^a Modified from: Recommended CSTE Surveillance Indicators for Substance Abuse and Mental Health. http://c.ymcdn.com/sites/www.cste.org/resource/resmgr/pdfs/pdfs2/2017RecommenedCSTESurvIndica.pdf.⁴⁸ Accessed April 11, 2018. Used with permission.

^b Method A: Hospitalization attributable to drugs with potential for abuse and dependence; all drugs, heroin poisoning, cocaine poisoning, prescription opioid poisoning, benzodiazepine-based tranquilizer poisoning, amphetamine poisoning, cocaine abuse or dependence, opioid abuse or dependence. Method B: Hospitalization associated with drugs with potential for abuse and dependence; all drugs, heroin poisoning, cocaine poisoning, prescription opioid poisoning, benzodiazepine-based tranquilizer poisoning, amphetamine poisoning, cocaine abuse or dependence, opioid abuse or dependence.

Currently, the Council of State and Territorial Epidemiologists is funding pilot tests in several states to assess the feasibility of data collection, the cost-effectiveness of such a system, the implications of separating public health from behavioral health activities, and potential locations of a national data repository. An initial environmental scan will assess states’ capacities to collect and report data on the indicators, identify the state agency responsible for collecting and reporting data, and catalog any data-sharing agreements.

Establishing a national behavioral health surveillance system is a large undertaking, but it is feasible and it is needed urgently. Other countries recognize this need; China has thoroughly evaluated its sources of information on mental health and has recommended improvements.⁴⁹ Taken together, national surveillance, including periodic evaluation of the surveillance system, measuring impact, disseminating information, and rapidly linking results to public health action, could reduce the burden of substance abuse and mental health problems in the United States.

Footnotes

Acknowledgment

The authors thank Thomas Farley, MD, MPH, commissioner of health, Philadelphia, Pennsylvania, who contributed helpful points to the development of this work.

Declaration of Conflicting Interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Lyerla is an employee of Western Michigan University, formerly of SAMHSA. Dr. Stroup is a contractor for SAMHSA.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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Toward a Public Health Surveillance System for Behavioral Health

Abstract

Keywords

Surveillance of Behavioral Health Cases

Necessary Elements of Behavioral Health Surveillance

Case Definitions

Data Sources

Case reporting

Surveys

Medical records

Disease registries

Mortality data

Syndromic surveillance

Frequency of Dissemination

Mechanisms for Reporting, Analysis, and Dissemination

Evaluating Behavioral Health Surveillance

Consensus Indicators for Behavioral Health

Footnotes

Acknowledgment

Declaration of Conflicting Interests

Funding

References