Lectures on Descriptive Epidemiology, Sources of PH Data Flashcards
What is the “nature of data?”
This refers to the source of data (e.g. vital statistics, case registries, physician’s records, general population survey, hospital/clinic cases) and will affect what types of statistical analysis and inferences are possible
What is “representativeness” defined?
External validity; generalizability of findings to the population from which the data have been taken.
What is “thoroughness” defined?
the extent to which all cases of a health phenomenon have been identified.
What is the privacy act of 1974?
Prohibits the release of confidential data without the consent of the individual.
What is the Freedom of Information Act? (1967)
Mandates the release of government information to the public, except for personal and medical files.
What is the Public Health Service Act? (1944)
Protects confidentiality of information collected by some federal agencies, e.g., NCHS.
What is the HIPAA Privacy Act?
Health Insurance Portability and Accountability Act of 1996.
The Secretary of HHS can publicize standards for exchange of health information / research
Individually identifiable information is protected, e.g.
The individual’s physical and mental health
Provision of health care to the individual
Payment for provision of health care
What is data sharing?
Refers to the voluntary release of information by one investigator or institution to another for the purpose of scientific research.
Issue: potential loss of control of information
What is record linkage?
Joining data from two or more sources, e.g., employment records and mortality data.
Applications include genetic research, planning of health services, and chronic disease tracking.
What are some limitations of mortality data?
Exact cause of death may be unclear
Lack of standardization within diagnostic criteria
Stigma with certain diseases may lead to inaccurate reporting
Errors or changes in coding (in accordance with the International Classification of Disease / ICD)
What are limitations of birth data?
Mothers may recall events inaccurately
Some neonatal conditions are not visibly present / noticeable at birth
What are limitations of reportable disease statistics?
Incompleteness of population coverage
Physician failure to complete paperwork
Unwillingness to report stigmatized illnesses
What are multiphasic screening programs?
Ongoing screening programs often are carried out at worksites
Limited by employee turnover
Data may not be etiologic (related to disease)
What is a registry?
a centralized database for collection of data about a disease. E.g. SEER program
Applications: patient tracking, identification of trends in disease, case control studies
How do registries maintain patient confidentiality?
the use of coding algorithms
What is the SEER Program?
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) is an authoritative source of information on cancer incidence and survival in the United States.
What are Morbidity Surveys?
collect data on the health status of a population group
Obtain more comprehensive info than routinely collected data
E.g. National Health Survey
What is the National Health Survey?
National Health Survey Act of 1956 established this to obtain information about the health of the US population
Conducted by the NCHS and has three programs
-National Health Interview Survey (& Household Interview Survey)
-Health Examination Survey
-Surveys of health resources
What is the Household Interview Survey?
general household survey
studies comprehensive range of conditions such as diseases, impairments, disabilities, and injuries
What is the Health Examination Survey?
The former name of the Health and Nutrition Examination Survey (NHANES)
What is NHANES?
The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The survey is unique in that it combines interviews and physical examinations. NHANES is a major program of the National Center for Health Statistics (NCHS). NCHS is part of the Centers for Disease Control and Prevention (CDC) and has the responsibility for producing vital and health statistics for the Nation.
The NHANES program began in the early 1960s and has been conducted as a series of surveys focusing on different population groups or health topics. In 1999, the survey became a continuous program that has a changing focus on a variety of health and nutrition measurements to meet emerging needs. The survey examines a nationally representative sample of about 5,000 persons each year. These persons are located in counties across the country, 15 of which are visited each year.
The NHANES interview includes demographic, socioeconomic, dietary, and health-related questions. The examination component consists of medical, dental, and physiological measurements, as well as laboratory tests administered by highly trained medical personnel.
What are sources of insurance data?
Social Security (disability benefits and medicare)
Health Insurance (info on the insured)
Life Insurance (causes of mortality, physical exam results)
Main limitation is that uninsured are excluded
What are deficiencies of hospital data?
not representative of any specific population
different information collected on each patient
settings may differ according to social class (e.g. specialized clinic versus emergency room versus urgent care)
What are the limitations of data from physician’s practices?
Highly limited due to:
confidentiality, highly select group, lack of standardization for information collected
Useful for verification of self reports and sources of expoure data