How do we get data? Flashcards
Ways to ID study participants
- Disease registries
- Census tract
- Neighborhoods
- Drivers’ license files
- Armed Forces
- Social media
- Schools
- Hospital
- Administrative datasets
- Community meeting points
- Work place
- Friends
Ways to approach study participants
- Telephone
- Letter
- Knock on the door
- In-person
Ways to collect self-report data directly from participants
Questionnaire: Self completed(Electronic / Paper, by mail / Paper, in-person) Interviewer administered(In-person / Telephone)
Focus Group
Ways to obtain (existing) individual-level data on study participants
Disease registry •Medical record •Manual Data Abstraction •Electronic Health Record •Archived tissue •Other records: School, Employment, Pharmaceutical, App data, Police, Jail, Military, Insurance claims, Health club data, Location data
Ways to collect new individual level (not self-reported)
- Blood draw → [Lab tests]
- Biopsy
- Nail clipping
- Hair
- Skin scraping
- Physical exam
- Fresh tissue
- eHealth apps
Ways to obtain community level data
- Census
- Pollution monitoring
- Consumer data
- Weather data
Public Health Surveillance
Monitoring public health situations
The ongoing, systematic collection, analysis, and interpretation of health-related data essential to planning, implementation, and evaluation of public health practice, closely integrated with the timely dissemination of these data to those responsible for prevention and control
Legal Authority for Conducting Public Health Surveillance
States have authority based on the U.S. Constitution
CDC Responds when
disease or condition has interstate implications
invited by a state
Conducting PH Surveillance
The federal government works in collaboration with the states to produce national surveillance data
Federal government does not decide which diseases are reportable
Provides statistical assistance for compilation of survey data and dissemination of results
Technical aid to states and localities to assist with the development of questionnaires
State-Based Notifiable Disease Surveillance Systems
Mandated by state law or regulation
Health care providers, hospitals, and laboratories are required to report cases to the local health department (LHD)
The LHD is usually responsible for case investigation and action
The LHD forwards the disease report to the state health department
The state health department assists the LHD as needed
Passive Surveillance
Diseases are reported by health care providers
Simple and inexpensive
Limited by incompleteness of reporting and variability of quality
Active Surveillance
Health agencies contact health providers seeking reports
Ensures more complete reporting of conditions
Used in conjunction with specific epidemiologic investigation
Sentinal Surveillance
Reporting of health events by health professionals who are selected to represent a geographic area or a specific reporting group
Syndromic Surveillance
Reporting of health events based on the presence of specific symptoms that may indicate an infectious agent or large potential health outbreak
Data sources for PH Surveillance
Reported diseases or syndromes
Vital records (e.g., birth and death certificates)
Registries (e.g., cancer, immunization)
Electronic health records (e.g., hospital discharge data)
Surveys (e.g., National Health and Nutrition Examination Survey [NHANES])
Nationally Notifiable Disease Surveillance System (NNDSS)
Many diseases on a state list are also nationally notifiable
Internationally Notifiable Diseases
Reporting to WHO is required for cases of:SmallpoxPoliomyelitis (wild type)Human influenza caused by any new subtypeSevere acute respiratory syndrome (SARS)
Public Health Surveillance-Based Action
Describe the burden of or potential for disease
Monitor trends and patterns in disease, risk factors, and agents
Detect sudden changes in disease occurrence and distribution
Provide data for programs, policies, and priorities
Evaluate prevention and control efforts
Vital Statistics
Births Deaths Marriages Divorces Fetal deaths
Vital Statistics: responsibility
States
BUT NVSS – National Vital Statistics System
Most successful inter-governmental data sharing effort in Public Health
The National Death Index (NDI)
Centralized database of death record information on file in state vital statistics offices. Working with these state offices, the National Center for Health Statistics (NCHS) established the NDI as resource to aid epidemiologists and other health and medical investigators with their mortality ascertainment activities.
Michigan Vital Statistics
Average day Infant mortality Marriage and divorce Fatal injuries Natality and pregnancy Mortality Baby names Historical data
Information abstracted from the medical record:
- Demographics: name, DOB, SSN, address, telephone, race/ethnicity, sex, marital status, birth place, insurance coverage
- Clinical information: primary site, tumor histology, stage, grade, lymph node involvement, tumor size, marker status, date of diagnosis, diagnostic confirmation
Information abstracted from the medical record, continued
- First course of treatment: surgery, chemotherapy, radiation therapy, some immunotherapy and hormonal therapy, dates
- Follow-up: recurrence, second primary, vital status, date of last activity, DOD, cause of death, death certificate number
- Medical identifiers: hospital, surgeon/oncologist, follow up physician
