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Data and Disease Control
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Learning Objectives
Define the term big data and give one example of its epidemiologic applications.
State three factors that affect the quality of epidemiologic data.
Differentiate between vital statistics data and reportable disease statistics.
List four data sources that are used in epidemiologic research.
Describe the role of international organizations in disseminating epidemiologic data.
Big Data
Vast electronic storehouses of information
-Internet search transactions
-Social media activities
-Data from health insurance programs
-Electronic medical records from receipt of healthcare services
Three defining features (three Vs):
-Volume
-Variety
-Velocity
Two vital concerns of epidemiology are:
-Quality of data available
-Appropriate applications of these data
Three defining features of big data
Variety
Velocity
Volume
Data mining
Online Sources of Retrieving Epidemiology Information
Google: http://www.google.com
Centers for Disease Control and Prevention (CDC): http://www.cdc.gov
MEDLINE, National Library of Medicine (NLM), National Institutes of Health (NIH): http://www.nlm.nih.gov
Websites of organizations or publications related to epidemiology include:
-American Public Health -Association: http://www.apha.org
Society for Epidemiologic Research: http://www.epiresearch.org
World Health Organization Statistical Information System (WHOSIS): http://www3.who.int/whosis/menu.cfm
Factors that Affect the quality of Epidemiologic data
Quality is determined by:
-Sources used to obtain the data
-How completely the data cover the reference population
Quality of data affects:
-Permissible applications of the data
-Types of statistical analyses that may be performed
Ask the following questions:
What is the nature of the data, including sources and content?
How available are the data?
How complete is the population coverage (representativeness)?
What are the appropriate and inappropriate uses of the data?
Factor that affect the quality of Epidemiologic Data
Nature of the data:
-The kind of data including the source and content (Vital statistics)
Availability
-Access
-HIPAA
Representativeness - generalizable
-External validity, its answering the question that you are asking
Appropriate use
Availability
Availability:
Refers to the investigator's access to data
--Example: Use of patient records and databases in which personally identifying information has been removed may be permitted.
In the United States, epidemiologic data that might identify a specific person may not be released without the person's consent.
HIPAA
--Protects personal information contained in health records.
Data banks that collect information from surveys may release epidemiologic data as long as individuals cannot be identified.
Appropriate Use
Appropriate use:
In some instances, the data may be used only for cross-sectional analyses.
In others, the data may be used primarily for case-control studies.
And in still others, the data may provide information about the incidence of disease and may be used to assess risk status.
U.S Bureau of the Census
Provides data that can be used to define the denominator in rates
--Official estimates of total population size and subdivisions of the population by geographic area
Census conducted every 10 years
other methods
Registries
Demographic or Health Surveys
Census limitations
only gathered every ten years, not always accurate especially in other countries,
Registries
Cancer, Communicable diseases, etc. Sometimes new diseases are still changing or our understanding is changing i.e. HIV Also, may only have limited types of information that are collected, not everything about the person is included or may have been asked.
Demographic and Health Surveys
People may not accurately report everything, or the people who do report are not representative of the whole group.
Vital Registration System and Vital Events
Vital events are deaths, births, marriages, divorces, and fetal deaths.
The vital registration system in the United States collects information routinely on these events.
Deaths
Mortality data are almost totally complete because deaths are unlikely to go unrecorded in the United States.
National Center for Health Statistics (NCHS) compiles and publishes national mortality rates.
Death certificate data in the United States include the following information:
--Demographic characteristics (e.g., age)
--Date and place of death (e.g., hospital)
--Cause of death (i.e., immediate cause and contributing factors)
Typical Data Recorded in Death Certificates
Demographic Characteristics
--age
--sex
--race
Date and place of death-- hospital or elsewhere
--cause of death
--immediate cause
--contributing factors
Death Certificates
ICD-10: Only as accurate as the data recorded by the physician/coder
--Diagnostic classifications
--CDC coding for death certificates and hospital records
--Definitions of case, and recording of cause of death
http://www.icd10data.com/ICD10CM/Codes
Find the code for alcoholic cirrhosis of the liver with ascites
Primary cause of death is sometimes unclear.
Diagnostic criteria may lack consistent standards.
Some conditions may be unreported because of stigma.
Limitations of data from death certificates
Even in countries where underlying causes of death are assigned by qualified staff, miscoding can occur. The main reasons for this are:
--systematic biases in diagnosis
--incorrect or incomplete death certificates
--misinterpretation of ICD rules for selection of the underlying cause
--variations in the use of coding categories for unknown and ill-defined causes.
For these reasons, data comparisons between countries can be misleading. WHO works with countries to produce country-level estimates, which are then adjusted to account for these differences
Birth Statistics
Include live births and fetal deaths
Presumed to be nearly complete
Used to calculate birth rates
Helpful in understanding birth defects, length of gestation, birth weight, and demographic background of the mother
Limitation
--Affected by mother's failure to recall events during pregnancy
--May miss conditions that were not detected at birth
Examples of Information Collected by Birth and Fetal Death Certificates
...
Data from Public Health Surveillance Programs
Three examples are surveillance systems for the following:
- Communicable and infectious diseases
- Noninfectious diseases
- Risk factors for chronic diseases
https://www.cdc.gov/brfss/index.html
Surveillance
As defined by the WHO: "the continuous, systematic collection, analysis and interpretation of health-related data needed for the planning, implementation, and evaluation of public health practice."
Refers to the systematic and continuous gathering of information about the occurrence of diseases and other health phenomena
Purpose of Public Health Surveillance
"The reason for collecting, analyzing and disseminating information on disease is to control that disease. Collection and analysis should not be allowed to consume resources if action does not follow."
--Bill Foege (Epidemiologist who devised the global strategy to eradicate smallpox).
Surveillance Process
(1) Identify/define the problem
(2) Collect/compile data about the problem
(3) Analyze/interpret the data
(4) Report/disseminate the analysis to those responsible for controlling the health problem (in a timely manner)
(5) Monitor/evaluate the usefulness and quality of the surveillance system for improvement
*Note: surveillance does not include actions to control the problem.
Criteria for selecting diseases include
Criteria for selecting diseases include:
--incidence and prevalence
--indices of severity (case-fatality ratio)
--mortality rate and premature mortality
--an index of lost productivity (bed-disability days)
--medical costs
--preventability
--epidemic potential
--information gaps on new diseases
Types of Surveillance
Case Surveillance
Population Suveillance
Case Surveillance
Focus: individuals or small groups
Ex:
-- monitoring to rule out Ebola Fever
-- contact tracing for TB or STIs
Population Surveillance
Focus: Populations (village, City, Jurisdiction)
Ex:
-- Vital Statistics (Mortality) Surveillance
-- Disease Reporting (Mortality) Surveillance
-- Exposure/Risk Factor Surveillance
Active Surveillance
with the intent to pursue active therapy if disease progresses
Outreach by public heath staff
find unindentified cases
ex:
-- door to door survey
-- Sero-survey
Passive Surveillance
public health surveillance in which data are sent to the health agency without prompting.
reports received by public health staff
only detects those who are ill
ex:
-- Notifiable disease surveillance
-- Health Information System (HIS)- based surveillance
Voluntary Surveillance
Volunteer
ex:
--Door to door survey
Mandatory Surveillance
Part of legislation
ex:
-- Notifiable disease surveillance
-- Ebola monitoring
The South Dakota State Department of Health contacts health providers in the state every Friday to obtain the number of patients examined with Influenza. What type of surveillance is this?
active
Reportable and Notifiable Disease Statistics
By legal statute, physicians and other health-care providers must report cases of certain diseases, known as reportable and notifiable disease to health authorities.
usually infectious and communicable diseases that might endanger a popullation
A major deficiency of these statistics can be incomplete population coverage
-- limited information about persons who develop a disease and do not seek medical attention
------- Infected individuals may be asymptomatic
-- Failure of physicians and other providers to fill out the proper forms
Internationally Notifiable Diseases
Yellow fever
Plague
Cholera
Chronic Disease Surveillance
The Example of Asthma
Asthma
A highly prevalent disease
Incurs substantial medical and economic costs
Associated with inflammatory lung and airway conditions
Asthma surveillance programs provide data necessary for the development and evaluation of healthcare services for afflicted persons.
Behavioral Risk Factor Surveillance System (BRFSS)
Used by the United States to monitor at the state level behavioral risk factors that are associated with chronic diseases.
Examples of data collected relate to:
--Health risk behaviors
--Preventive health practices
--Healthcare access
Case Registries
centralized database for collection of information about a disease
ex:
The National Program of Cancer Registries (NPCR)
The Surveillance, Epidemiology, and End Results (SEER) Program
Register
the document used to collect the information
Case Registries Use to
Monitor cancer trends over time
Show cancer patterns in various populations and identify high risk groups
Guide planning and evaluation of cancer control programs
Help set priorities for allocating health resources
Advance clinical, epidemiologic, and health services research
Data from the National Center for Health Statistics (NCHS)
Scope of information is extensive.
Examples of surveys and data collection systems include:
National Health Interview Survey (NHIS)
National Health and Nutrition Examination Survey (NHANES)
National Vital Statistics System (NVSS)
Data from International Organizations
Examples of organizations that provide international and foreign data regarding disease and health:
World Health Organization (WHO)
--Provides global infectious disease surveillance
--Yields data on health indicators
--Collects mortality data
European Union
--Public health data include social and health inequalities and determinants of health.
Sources of Data
Sources may be general or disease-specific
Examples:
mortality and morbidity reports
hospital records
laboratory diagnoses
outbreak reports
vaccine utilization
sickness absence records
biological changes in agent, vectors, or reservoirs
blood banks
Conclusion
Epidemiology is a quantitative discipline.
--Data are required for descriptive and analytic studies.
--Data quality is a central concern of epidemiology.
Extensive data resources are available.
--Online data sources: websites operated by health-related organizations
--Vital registration system
--National Center for Health Statistics
--International data sources
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