How do we get data?

Question 1

Ways to ID study participants

Answer 1

• Disease registries
• Census tract
• Neighborhoods
• Drivers’ license files
• Armed Forces
• Social media
• Schools
• Hospital
• Administrative datasets
• Community meeting points
• Work place
• Friends

Question 2

Ways to approach study participants

Answer 2

• Telephone
• Letter
• Knock on the door
• E-mail
• In-person

Question 3

Ways to collect self-report data directly from participants

Answer 3

Questionnaire:
Self completed(Electronic / Paper, by mail / Paper, in-person)
Interviewer administered(In-person / Telephone)

Focus Group

Question 4

Ways to obtain (existing) individual-level data on study participants

Answer 4

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

Question 5

Ways to collect new individual level (not self-reported)

Answer 5

• Blood draw → [Lab tests]
• Biopsy
• Nail clipping
• Hair
• Skin scraping
• Physical exam
• Fresh tissue
• eHealth apps

Question 6

Ways to obtain community level data

Answer 6

• Census
• Pollution monitoring
• Consumer data
• Weather data

Question 7

Public Health Surveillance

Answer 7

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

Question 8

Legal Authority for Conducting Public Health Surveillance

Answer 8

States have authority based on the U.S. Constitution

Question 9

CDC Responds when

Answer 9

disease or condition has interstate implications

invited by a state

Question 10

Conducting PH Surveillance

Answer 10

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

Question 11

State-Based Notifiable Disease Surveillance Systems

Answer 11

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

Question 12

Passive Surveillance

Answer 12

Diseases are reported by health care providers

Simple and inexpensive

Limited by incompleteness of reporting and variability of quality

Question 13

Active Surveillance

Answer 13

Health agencies contact health providers seeking reports

Ensures more complete reporting of conditions

Used in conjunction with specific epidemiologic investigation

Question 14

Sentinal Surveillance

Answer 14

Reporting of health events by health professionals who are selected to represent a geographic area or a specific reporting group

Question 15

Syndromic Surveillance

Answer 15

Reporting of health events based on the presence of specific symptoms that may indicate an infectious agent or large potential health outbreak

Question 16

Data sources for PH Surveillance

Answer 16

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])

Question 17

Nationally Notifiable Disease Surveillance System (NNDSS)

Answer 17

Many diseases on a state list are also nationally notifiable

Question 18

Internationally Notifiable Diseases

Answer 18

Reporting to WHO is required for cases of:SmallpoxPoliomyelitis (wild type)Human influenza caused by any new subtypeSevere acute respiratory syndrome (SARS)

Question 19

Public Health Surveillance-Based Action

Answer 19

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

Question 20

Vital Statistics

Answer 20

Births
Deaths
Marriages
Divorces
Fetal deaths

Question 21

Vital Statistics: responsibility

Answer 21

States

BUT NVSS – National Vital Statistics System
Most successful inter-governmental data sharing effort in Public Health

Question 22

The National Death Index (NDI)

Answer 22

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.

Question 23

Michigan Vital Statistics

Answer 23

Average day
Infant mortality
Marriage and divorce
Fatal injuries
Natality and pregnancy
Mortality
Baby names
Historical data

Question 24

Information abstracted from the medical record:

Answer 24

1. Demographics: name, DOB, SSN, address, telephone, race/ethnicity, sex, marital status, birth place, insurance coverage
2. Clinical information: primary site, tumor histology, stage, grade, lymph node involvement, tumor size, marker status, date of diagnosis, diagnostic confirmation

Question 25

Information abstracted from the medical record, continued

Answer 25

3. First course of treatment: surgery, chemotherapy, radiation therapy, some immunotherapy and hormonal therapy, dates
4. Follow-up: recurrence, second primary, vital status, date of last activity, DOD, cause of death, death certificate number
5. Medical identifiers: hospital, surgeon/oncologist, follow up physician