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The Electronic Surveillance System for the Early Notification of Community-Based Epidemics

(ESSENCE) is a web-based syndromic surveillance platform designed to monitor public health indicators in near real-time for early detection and tracking of health events, including outbreaks, chronic conditions, and other public health concerns. Originally developed by the Johns Hopkins University Applied Physics Laboratory in collaboration with the Department of Defense and later adopted by the Centers for Disease Control and Prevention (CDC) for the National Syndromic Surveillance Program (NSSP), ESSENCE processes data from emergency departments (EDs), outpatient clinics, and other sources to provide situational awareness and support public health responses. Below is a detailed explanation of ESSENCE, its capacity to monitor neurological and mental health conditions, its defined syndrome categories, and its data collection mechanisms, based on available information and critical analysis.

Overview of the ESSENCE System

ESSENCE is a flexible, secure, and automated system that aggregates and analyzes health data to identify trends, anomalies, or clusters of health events. It was initially developed to detect bioterrorism-related threats but has since expanded to monitor a wide range of health conditions, including infectious diseases, chronic diseases, mental health disorders, and environmental health events. The system is used by state and local health departments, the CDC, the Department of Defense, and the Veterans Administration, with nearly 6,000 healthcare facilities across 49 U.S. states contributing ED data daily to the NSSP’s BioSense Platform, which integrates ESSENCE as its analytic engine.

Key features of ESSENCE include:

  • Real-Time Data Processing: It processes data streams such as ED chief complaints, discharge diagnoses, and other health records in near real-time.
  • Syndrome Grouping: It categorizes data into predefined or customizable “syndrome” categories based on symptoms, diagnoses, or keywords.
  • Visualization Tools: It offers dashboards, time-series graphs, and geospatial mapping to help public health officials interpret trends.
  • Customizable Queries: Users can tailor queries to local needs, enabling surveillance of specific conditions or populations.
  • Statistical Alerts: It employs algorithms to detect statistically significant increases in health events compared to historical baselines.

ESSENCE’s adaptability allows it to serve both broad surveillance goals and targeted monitoring, but its effectiveness depends on data quality, user expertise, and the specificity of syndrome definitions.

Capacity to Monitor Neurological and Mental Health Conditions

ESSENCE’s ability to monitor neurological and mental health conditions stems from its capacity to analyze ED data, which often captures acute presentations of these disorders. Mental health and neurological conditions are significant public health concerns, with mental illnesses affecting nearly 20% of U.S. adults and neurological disorders impacting over 3 billion people globally in 2021. ED visits for mental health issues, such as depression, anxiety, and stress reactions, have risen significantly (e.g., a 55% increase from 2006–2013 per the Healthcare Cost and Utilization Project). ESSENCE addresses this burden by enabling local health departments to track trends, assess disparities, and evaluate interventions.

Neurological Conditions

ESSENCE includes a neurological syndrome category that groups ED visits based on chief complaints or diagnosis codes related to neurological symptoms, such as seizures, altered mental status, paralysis, or headaches. Examples of conditions monitored include:

  • Epilepsy: ESSENCE can detect clusters of seizure-related ED visits, potentially identifying uncontrolled epilepsy or environmental triggers.
  • Stroke: Acute neurological events like stroke may be captured through symptoms like weakness, numbness, or speech difficulties.
  • Meningitis or Encephalitis: These conditions may appear under neurological or fever-related syndromes, prompting rapid investigation.
  • Guillain-Barré Syndrome: Post-infectious neurological complications, including those linked to COVID-19, can be tracked if coded appropriately.

However, ESSENCE’s neurological monitoring is limited by its reliance on syndromic data, which may lack specificity. For instance, a chief complaint of “dizziness” could reflect a neurological disorder, dehydration, or another cause, requiring follow-up to confirm diagnoses. Additionally, chronic neurological conditions (e.g., Parkinson’s disease, multiple sclerosis) are less likely to present acutely in EDs, reducing ESSENCE’s utility for long-term monitoring of these disorders unless they manifest as acute exacerbations.

Mental Health Conditions

ESSENCE has been increasingly utilized for mental health surveillance, particularly following the rise in ED visits for mental health crises. Local health departments, such as those in Boulder County, Colorado, and the Colorado North Central Region, have developed specific mental health indicators within ESSENCE to track:

  • Mood and Depressive Disorders: Queries can identify ED visits with chief complaints like “depression,” “sadness,” or related ICD-10 codes (e.g., F32–F33).
  • Anxiety Disorders: Terms like “anxiety,” “panic,” or codes (e.g., F41) are used to monitor acute anxiety presentations.
  • Schizophrenic Disorders: Visits involving hallucinations, delusions, or codes (e.g., F20) can be tracked.
  • Suicide and Self-Harm: ESSENCE can monitor suicide attempts or ideation using keywords (e.g., “suicidal,” “overdose”) or codes (e.g., T14.91, X71–X83).
  • Substance Use Disorders: Often co-occurring with mental health issues, these are tracked via overdose or intoxication-related visits.

A 2019 study demonstrated how ESSENCE queries were customized to monitor these sub-indicators in adults, showing that diagnosis codes (e.g., ICD-10) are more reliable than chief complaints alone for identifying mental health-related visits. For example, in Colorado, ESSENCE provided local, observation-level, and near-real-time data, enabling public health officials to gauge disparities, monitor trends, and prioritize interventions. This contrasts with traditional mental health data sources (e.g., surveys, hospital discharge records), which are often delayed or less granular.

Despite its strengths, ESSENCE’s mental health monitoring faces challenges:

  • Stigma and Underreporting: Patients may not disclose mental health symptoms, leading to undercoding in ED records.
  • Data Variability: Differences in how EDs code mental health conditions (e.g., chief complaint vs. discharge diagnosis) can affect consistency.
  • Limited Chronicity: ESSENCE excels at capturing acute crises but is less suited for tracking chronic mental health conditions managed outside EDs.

Defined Syndrome Categories

ESSENCE organizes data into syndrome categories, which are collections of symptoms, chief complaints, or diagnosis codes expected to correspond to specific health outcomes. These categories generalize the medical definition of a syndrome (a set of signs and symptoms) to include any grouped health data, such as hospital visits or billing records. Standard syndrome categories in ESSENCE, as used by jurisdictions like Missouri’s Department of Health and Senior Services, include:

  • Botulism-like
  • Exposure
  • Fever
  • Gastrointestinal
  • Hemorrhagic illness
  • Influenza-like illness
  • Injury
  • Neurological
  • Rash
  • Respiratory
  • Shock/coma

The neurological syndrome category specifically captures visits with complaints or codes related to neurological dysfunction, such as:

  • Seizures
  • Altered mental status
  • Paralysis or weakness
  • Headaches (potentially overlapping with migraine)
  • Dizziness or vertigo

For mental health, ESSENCE does not have a universal “mental health” syndrome but allows users to create custom queries. For example:

  • Boulder County, Colorado: Developed queries for overall mental health trends and specific sub-indicators (e.g., mood disorders, anxiety).
  • Miami-Dade County, Florida: Used ESSENCE to monitor reportable conditions like meningitis, which may present with neurological or psychiatric symptoms.

Custom syndromes are built using:

  • Chief Complaint Text: Free-text entries (e.g., “anxiety attack,” “seizure”).
  • Diagnosis Codes: ICD-10 or SNOMED codes linked to specific disorders.
  • Keywords: Terms like “depressed,” “hallucinations,” or “stroke-like symptoms.”

The flexibility to customize syndromes is a strength, but it requires local expertise to ensure queries are sensitive and specific. Overly broad queries (e.g., capturing all “headache” visits) may generate noise, while overly narrow ones (e.g., only specific ICD-10 codes) may miss cases.

Data Collection Mechanisms

ESSENCE collects data from multiple sources, primarily:

  • Emergency Department Records: The backbone of ESSENCE, including:
    • Chief Complaints: Free-text descriptions of the patient’s reason for visit (e.g., “confusion,” “nervous breakdown”).
    • Discharge Diagnoses: Standardized codes (e.g., ICD-10, SNOMED) assigned post-visit.
    • Demographics: Age, gender, ZIP code, etc., for geospatial and population analysis.
  • Outpatient Clinic Data: Less common but used in some jurisdictions (e.g., DoD studies).
  • Prescription Data: Occasionally integrated to monitor medication-related trends (e.g., antidepressants, antiepileptics).
  • Other Sources: Laboratory orders, over-the-counter drug sales, or absenteeism rates, though these are less relevant for neurological/mental health monitoring.

Data flow in ESSENCE:

  1. Acquisition: Hospitals send de-identified ED data to ESSENCE via secure electronic interfaces, often daily.
  2. Processing: ESSENCE parses data, mapping chief complaints and codes to syndrome categories.
  3. Analysis: Statistical algorithms compare current data to historical baselines, flagging anomalies (e.g., a spike in seizure-related visits).
  4. Visualization: Users access results through web-based dashboards, enabling rapid interpretation.

For neurological and mental health conditions, data collection is robust in ED settings but limited by:

  • Data Quality: Incomplete or vague chief complaints (e.g., “feeling bad”) reduce specificity.
  • Access Barriers: Not all hospitals contribute to ESSENCE, and rural areas may be underrepresented.
  • Privacy Concerns: De-identification protects patients but may limit linkage to longitudinal records for chronic conditions.

Critical Analysis and Limitations

While ESSENCE is a powerful tool, its capacity to monitor neurological and mental health conditions has caveats:

  • Syndromic vs. Diagnostic: ESSENCE relies on pre-diagnostic data, which is less precise than confirmed diagnoses. For example, a “neurological” syndrome may include benign conditions (e.g., tension headaches) alongside serious ones (e.g., stroke).
  • Acute Focus: It excels at detecting acute events (e.g., suicide attempts, seizures) but struggles with chronic conditions managed in outpatient settings, such as dementia or bipolar disorder.
  • Coding Variability: Differences in how EDs document neurological or mental health symptoms (e.g., free-text vs. codes) can lead to inconsistent surveillance.
  • Resource Dependence: Effective use requires trained epidemiologists and local customization, which may be challenging for underfunded health departments.
  • Equity Gaps: Over 80% of neurological health loss occurs in low- and middle-income countries, but ESSENCE is primarily U.S.-centric, limiting its global applicability for these conditions.

Moreover, the system’s reliance on ED data biases it toward severe presentations, potentially missing milder or undiagnosed cases. For mental health, stigma may further suppress reporting, as patients may avoid disclosing symptoms or seek care outside EDs. Neurologically, conditions like migraine or neuropathy may be underrepresented unless they prompt ED visits.

Conclusion

ESSENCE is a versatile syndromic surveillance system that effectively monitors acute neurological and mental health conditions through its neurological syndrome category and customizable mental health queries. By leveraging near-real-time ED data, it tracks conditions like seizures, stroke, depression, anxiety, and suicide attempts, supporting public health responses with timely insights. Its syndrome categories, built on chief complaints and diagnosis codes, allow flexibility but require careful design to balance sensitivity and specificity. Data collection is robust, drawing from millions of ED visits, but it is constrained by coding variability and an acute-care focus.

For neurological conditions, ESSENCE is best suited for acute events (e.g., meningitis outbreaks) but less effective for chronic diseases. For mental health, it fills a critical gap in local, real-time surveillance, though it misses non-ED cases. While powerful, ESSENCE is not a standalone solution—it complements traditional surveillance (e.g., hospital registries, surveys) and requires investment in training and data quality to maximize impact. Future enhancements could include integrating outpatient or wearable device data to better capture chronic neurological and mental health trends, but this would demand significant infrastructure upgrades and privacy safeguards.

Citations:⁠Pmc.ncbi.nlm.nih⁠WHO⁠Pmc.ncbi.nlm.nih

Sources

ESSENCE II and the Framework for Evaluating Syndromic Surveillance Systems

Persons using assistive technology might not be able to fully access information in this file. For assistance, please send e-mail to: mmwrq@cdc.gov. Type 508 Accommodation and the title of the report in the subject line of e-mail · Joseph S. Lombardo,1 H. Burkom,1 J. Pavlin2 1Johns Hopkins University Applied Physics Laboratory, Laurel, Maryland; 2Walter Reed Army Institute of Research, Silver Spring, Maryland

CDCitemSkip to main content · When autocomplete results are available use up and down arrows to review and enter to select · Select language · English · العربية · 中文 · Français · Русский · EspañolWHOEditorial: Mental Disorders Associated With Neurological Diseases – PMCIn order to address this, Lian et al. investigated clinical features and neurochemical changes in patients with Parkinson’s disease. The authors report that a high proportion of patients with Parkinson’s disease had depression. Motor symptoms, postural instability, gait difficulty, anxiety, and fatigue are the significant influencing factors in cases of Parkinson’s disease with depression. Moreover, dopamine may play a more important role in Parkinson’s disease with depression compared to 5-HT. In another study, Zhu et al., observed that high concentrations of dopamine may cause the high incidence of restless leg syndrome (RLS) in Parkinson’s disease patients, which was accompanied by anxiety, depression, insomnia, and other mental health symptoms. This finding highlights the importance of monitoring such symptoms in the clinical management of patients with Parkinson’s disease.Pmc.ncbi.nlm.nihESSENCE II and the Framework for Evaluating Syndromic Surveillance SystemsPersons using assistive technology might not be able to fully access information in this file. For assistance, please send e-mail to: mmwrq@cdc.gov. Type 508 Accommodation and the title of the report in the subject line of e-mail · Joseph S. Lombardo,1 H. Burkom,1 J. Pavlin2 1Johns Hopkins University Applied Physics Laboratory, Laurel, Maryland; 2Walter Reed Army Institute of Research, Silver Spring, MarylandCDCUsing ESSENCE to Meet Local Needs for Mental Health Data: Query & Results – PMCAn official website of the United States government · Official websites use .gov A .gov website belongs to an official government organization in the United StatesPmc.ncbi.nlm.nihOver 1 in 3 people affected by neurological conditions, the leading cause of illness and disability worldwideA major new study released by The Lancet Neurology shows that, in 2021, more than 3 billion people worldwide were living with a neurological condition. The World Health Organization (WHO) contributed to the analysis of the Global Burden of Disease, Injuries, and Risk Factor Study (GBD) 2021 data. Neurological conditions are now the leading cause of ill health and disability worldwide.WHOElectronic Surveillance System for the Early Notification of Community-Based Epidemics (ESSENCE): Overview, Components, and Public Health …The Electronic Surveillance System for the Early Notification of Community-Based Epidemics (ESSENCE) is a secure web-based tool that enables health care practitioners to monitor health indicators of public health importance for the detection and …Pmc.ncbi.nlm.nihJMIR Mental Health – Data Visualization for Chronic Neurological and Mental Health Condition Self-management: Systematic Review of User PerspectivesBackground: Remote measurement technologies (RMT) such as mobile health devices and apps are increasingly used by those living with chronic neurological and mental health conditions. RMT enables real-world data collection and regular feedback, providing users with insights about their own conditions. Data visualizations are an integral part of RMT, although little is known about visualization design preferences from the perspectives of those living with chronic conditions. Objective: The aim of this review was to explore the experiences and preferences of individuals with chronic neurological and mental health conditions on data visualizations derived from RMT to manage health. Methods: In this systematic review, we searched peer-reviewed literature and conference proceedings (PubMed, IEEE Xplore, EMBASE, Web of Science, Association for Computing Machinery Computer-Human Interface …Mental.jmirNational Syndromic Surveillance Program (NSSP) | National Syndromic Surveillance Program (NSSP) | CDCNSSP supports public health professionals as we work together to protect health across our nation.CDCESSENCE | Health & Senior ServicesWelcome to the Missouri Department of Health and Senior Services ESSENCE websiteHealth.moCustomizing ESSENCE Queries for Select Mental Health Sub-indicators – PMCThe new PMC design is here! Learn more about navigating our updated article layout. The PMC legacy view will also be available for a limited time · An official website of the United States governmentNcbi.nlm.nihJMIR Public Health and Surveillance – Electronic Surveillance System for the Early Notification of Community-Based Epidemics (ESSENCE): Overview, …Background: The Electronic Surveillance System for the Early Notification of Community-Based Epidemics (ESSENCE) is a secure web-based tool that enables health care practitioners to monitor health indicators of public health importance for the detection and tracking of disease outbreaks, consequences of severe weather, and other events of concern. The ESSENCE concept began in an internally funded project at the Johns Hopkins University Applied Physics Laboratory, advanced with funding from the State of Maryland, and broadened in 1999 as a collaboration with the Walter Reed Army Institute for Research. Versions of the system have been further developed by Johns Hopkins University Applied Physics Laboratory in multiple military and civilian programs for the timely detection and tracking of health threats. Objective: This study aims to describe the components and development of a …Publichealth.jmirData Collection for Mental Health Studies Through Digital Platforms: Requirements and Design of a Prototype – PMCMental and behavioral disorders are the main cause of disability worldwide. However, their diagnosis is challenging due to a lack of reliable biomarkers; current detection is based on structured clinical interviews which can be biased by the patient’s …Ncbi.nlm.nihNeurological syndromes which can be mistaken for psychiatric conditions | Journal of Neurology, Neurosurgery & PsychiatryAll illness has both psychological and physical dimensions. This may seem a startling claim, but on reflection it is uncontroversial. Diseases don’t come to doctors, patients do—and the processes by which patients detect, describe, and ponder their symptoms are all eminently psychological. This theoretical point has practical implications. If we adopt a “bio-psycho-social” approach to illness generally, one which recognises the biological, psychological, and social aspects of our lives, we become less likely to neglect the treatable psychological origins of many physical complaints (from globus hystericus to full blown conversion disorder) and the treatable psychological consequences (such as depression and anxiety) of much physical disease. Neurology has an especially close relationship with psychology and psychiatry, as all three disciplines focus on the functions and …Jnnp.bmjNeurological Disorders: What They Are, Symptoms & TypesNeurological disorders are conditions that affect how your nervous system functions. There are hundreds of neurological disorders.ClevelandclinicFunctional Neurologic Disorder | National Institute of Neurological Disorders and StrokeFunctional neurologic disorder (FND) refers to a neurological condition caused by changes in how brain networks work, rather than changes in the structure of the brain itself, as seen in many other neurological disorders.Ninds.nih(PDF) Data Visualization for Chronic Neurological and Mental Health Condition Self-management: Systematic Review of User PerspectivesPDF | Background: Remote measurement technologies (RMT) such as mobile health devices and apps are increasingly used by those living with chronic… | Find, read and cite all the research you need on ResearchGateResearchgateTransforming Neurology Care Delivery Through a Population Health Data Strategy – PMCWith more than 30% of global data originating from health care, deriving usable insights that improve health requires population health analytics. In neurology, data-driven approaches have grown in significance because of digital health records and …Pmc.ncbi.nlm.nihNeurological Disorders – PhysiopediaAccording to the World Health Organisation (WHO), neurological disorders are any diseases affecting the entirety of the nervous system [1]. These are conditions affecting the Central Nervous System’s (CNS) neurons or tracts in the Spinal Cord or in the whole brain or one of its constituents e.g. Cerebrum (Cortex), Basal Ganglia, Diencephalon, Brain stem (Midbrain, Pons and Medulla Oblongata), Cerebellum. In addition to conditions affecting the Peripheral Nervous System involving Cranial nerves or their nuclei, Spinal plexuses, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction and muscles[1].Physio-pediaNeurologic Diseases and Conditions – Brigham and Women’s HospitalLearn more about the neurologic and psychiatric diseases and conditions evaluated and treated at the Brigham and Women’s Neurosciences Center.BrighamandwomensInnovative Uses for Syndromic Surveillance – PMCTo determine if expanded queries can be used to identify specific reportable diseases/conditions not detected by using automated syndrome categories, we developed new categories to use with the Electronic Surveillance System for the Early Notification …Ncbi.nlm.nihFull article: The development of the ESSENCE Diagnostic aid (ESSENCE-D)Neurodevelopmental differences/Neurodivergence (ND) include/s a wide range of neurotypes that have their onset in early childhood. Some examples include autism, attention-deficit/hyperactivity diso…Tandfonline12.00 Mental Disorders – Adult | Disability | SSAAdult Listings (Part A) · Childhood Listings (Part B)SsaNeurological Disorders | Johns Hopkins MedicineHere is a list of nervous system disorders that require clinical care by a physician or other healthcare professional.HopkinsmedicineNeurological Disorders – Mental, Neurological, and Substance Use Disorders – NCBI BookshelfNeurological disorders pose a large burden on worldwide health. The most recent estimates show that the neurological disorders included in the Global Burden of Disease (GBD) Study–Alzheimer’s and other dementias, Parkinson’s disease, multiple sclerosis, epilepsy, and headache disorders (migraine, tension-type headache [TTH], and medication-overuse headache [MOH])–represent 3 percent of the worldwide burden of disease. Although this is a seemingly small overall percentage, dementia, epilepsy, migraine, and stroke rank in the top 50 causes of disability-adjusted life years (DALYs) (Murray and others 2012).Ncbi.nlm.nih