SOURCES OF

EPIDEMIOLOGICAL
DATA, THEIR USE AND
CHOICES
WEEK 6
Dr. Vitalis Okoth
 Introduction:
Most countries maintain comprehensive death
registration systems at the national or regional levels,
and cause of death information for identified deaths can
be obtained by requesting copies of death certificates from
national, state, or municipal vital statistics offices.
In most instances the causes of death are coded by a
nosologist trained in the rules specified in the International
Classification of Diseases (ICD) volumes compiled by the
World Health Organisation-Reviewed every decade.
 ROUTINE RECORDS:
• Some countries or states also maintain incidence
registers for conditions such as cancer, congenital
malformations or epilepsy.
• In some instances, de facto disease registers may be
established through disease notification systems.
• In particular, many Western countries have notification
systems for occupational diseases.
For example, in the United Kingdom, the Surveillance of Work Related and
Occupational Respiratory Disease (SWORD)
Kenya (RRI-HIV,TB.Malaria and Pneumonia among<5y.o)
 ROUTINE RECORDS:
Other routinely collected records that can be
used for determining health status in cohort
studies, or identifying cases for case-control
studies, include
• hospital admission records, health insurance
claims,
• health maintenance organization (HMO)
records, and
• family doctor (general practitioner records).
 FROM REALITY TO ACTION
Real world
(Collection, coding)

Data
(Processing, interpretation, presentation)

Information
(Politics, commitment)

Action

Source: Oxford Handbook of Public Health Practice

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 USE OF WORDS ‘DATA’ & ‘INFORMATION’

• DATUM (singular) or DATA (plural) refers to raw numbers or

other measures, usually discrete and gives objective facts
about events.

• INFORMATION refers to what emerges when data are

processed, analyzed, interpreted and presented.
Information is data transformed (contextualized,
categorized, corrected, calculated, condensed) into a
message
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 WHEN TRANSFORMING DATA
Always bear in mind the issues that affect the
quality of the data:
• Validity - are the data capturing the concept or quantity you intended?

• Selection bias – where the data mislead because they are not
representative of the population

• Classification bias – where there is a non-random effect on putting

data into groupings (non-blind assessments of any outcome)
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 BASIC CONSIDERATIONS FOR DATA SOURCES IN
EPIDEMIOLOGY
In most countries, there are many different sources of information
on any Specific project/program/service and different types of
information vary in their C.A.R.T:
• Completeness
• Accuracy
• Relevance and/or Representativeness
• Timeliness

DATA SOURCES also vary in the ease with which a base population can
be identified, for use in the denominator, for calculating rates.

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 KEY ISSUES FOR ASSESSING APPROPRIATENESS
AND USEFULNESS OF DATA & DATA SOURCES
Here are some guiding issues but none is absolute, and the balance of
advantage & disadvantage must be assessed using judgment.
• Technical issues
- Are the definitions clear and appropriate?
- Are the target and study population clear?
- Are the data collection methods clear and sound?
- How complete, accurate, relevant, and timely are the data?
- How much does this matter?

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 KEY ISSUES FOR ASSESSING APPROPRIATENESS
AND USEFULNESS OF DATA & DATA SOURCES
• Issues relating to outcome or decision involved
- Is the study population sufficiently representative of the target
population for the purpose of the decision?
- Do you need absolute or relative estimates, to make the best
decision ?
- Would existing data source suffice, by using comparative
data or by extrapolating with care?
- Would qualitative information suffice, when habit automatically
suggests quantitative data?

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 WHAT DOES THE DATA SOURCE DESCRIBE?
This depends on the goals/ objectives of program and may include
information such as:
• Demographic & Socioeconomic features of the study-population:
age, sex, education, occupation, mobility and geographical distribution.
• Health status: health service use data (diagnoses, interventions,
procedures, health outcomes of interventions), morbidity, mortality (TB,
Malnutrition, HIV/AIDS, co-infections and OIs)
• Programmatic: inputs, process, outputs, outcome & impact
• CONSIDER EPIDEMIOLOGICAL RESEARCH TRAINGLE – Biomedical
Biomedical, Behavioral and Health services/Systems
ERT

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Behavioural Health
11
 HOW IS THE INFORMATION COLLECTED?

Information can be Routine or Specially collected

• Routine /(Passive) refers to collected, assembled, and made

available regularly, according to well-defined protocols and
standards.
Such data are usually available at regular intervals
They intend to allow tracking over time
They are codified using national or international standards (ICD)

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 HOW IS THE INFORMATION COLLECTED?

• Specially (Actively) collected refers to collection for a particular

purpose, without the intention of regular repetition or adherence to
standards (other than those needed for the specific study or tasks); such data
are usually:

- aimed at a specific , time-limited study or tasks;

- codified according to the goals in hand and the
wishes of the investigators.

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 CLASSIFICATION OF INTRINSIC TYPES OF DATA

Sometimes data are categorized as hard or soft:

Hard data: are precise (or intend to be precise):

They are often numerical; if not, then coded according to
a protocol;
They are reproducible, and likely to be similar even if the
data collectors are varied. (reliability)

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 CLASSIFICATION OF INTRINSIC TYPES OF DATA
Soft data: tend to be:
- qualitative, attempting to capture some of the subtlety
of human experience;
- often narrative or textual form, at least as they are
collected;
- Inclusive of some subjectivity, due to the complexity of
the personalities of the data collectors and the individuals
studied.
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 THE UTILITY OF THE INFORMATION

Neither hard nor soft data are intrinsically better than the other. The utility of the
information (in terms of better decision making) often comes from combining the
two:

• Harder data usually allow more precise analysis and comparisons, but may fail to
capture subtleties.

• Softer data usually capture more of the ‘truth’ about the world, but often at the
expense of emphasizing the uniqueness of the circumstances, and are less likely to
allow comparisons and conclusions.

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 HEALTH INFORMATION SYSTEMS
(HIS)
• Health system
– All resources, organizations and actors that are
involved in the regulation, financing, and provision of
actions whose primary intent is to protect, promote or
improve health.” (WHO, 2000)

• Health Information System (HIS):

– A system that provides specific information support to the
decision-making process at each level of an organization
(Hurtubise, 1984)
– Similar to a health management information system (HMIS)
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 What is the problem with many existing routine health
information systems (RHIS)?

• Irrelevance and poor quality of the data collected

• Fragmentation into “program- oriented” information systems:

duplication and waste

• Centralization of information management without feedback to lower

levels

• Poor and inadequately used health information system infrastructure

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 As a result…
• Poor use of information by users at all levels: care providers
as well as managers

• “Block” between facility and community health information

systems

• Reliance on more expensive survey data collection methods

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 What characterizes a good HIS?

• Regular production of good quality data

• Continued use of health data for improving

health system operations and health status.

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 What influences data quality and
use?

·Standard indicators
·Data collection forms Technical
·Appropriate IT
factors
·Data presentation
·Trained people

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 What influences data quality and
use?

·Resources
·Structure of the
health system System and
·Roles, and environment
responsibilities factors
·Organizational
culture

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 What influences data quality and
use?

·Motivation
·Attitudes and values
·Confidence Behavioral
·Sense of factors
responsibility

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SYNOPSIS OF SOME HEALTH & SOCIAL
PROGRAMS
• Malaria Program
• TB Program
• HIV Program
• Nutrition Program (To capture various issues including SAM/PEM in
children to s lifestyle among adults for Diabetics and HTN patients)
• Family Planning Program
• Immunization Program
• Tobacco Prevention Program
• Poverty Alleviation Program
• Cancer screening and management programme
• Occupational health issues – Road accidents, industrial accideents
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 EXAMPLES OF SOURCES OF DATA IN
EPIDEMIOLOGY

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 1. MORBIDITY SURVEYS:
In some circumstances, routine records may not
be available for the health outcome under study,
or may not be sufficiently complete or accurate
or use in epidemiological studies.
Although this could in theory apply to mortality
records, more commonly this is an issue for non-
fatal conditions, particularly chronic diseases
such as respiratory disease and diabetes.
2. MORTALITY SURVEYS
Another way to measure
mortality is by doing a survey. But
cross-sectional surveys collect
data at a single point in time.
How can they measure a rate of
something occurring over a period
of time?
Mortality surveys
During a survey, deaths are
counted retrospectively by asking
survey respondents about deaths
which have occurred during a
specific period of time.
 3. NUTRITIONAL
SURVEYS
Anthropometric data can also be collected
in nutrition surveys. A random sample of
children is selected from the population.

These children are then weighed and

measured and the prevalence of
malnutrition (whatever form you are
interested in) is then calculated from the
sample of children.
 Nonetheless, nutrition surveys
have many problems:
They often provide very little information about the underlying causes of
malnutrition.
Surveys are expensive and time-consuming.
There are many potential sampling mistakes.;
Example.
• Selecting random households, and then selecting only one child in each
selected household.
• Weighing and measuring only children who are at home at the time of the
survey team's visit.
• Inclusion of many children older than the target group because, instead of
accurately measuring age, survey teams use height criteria to
determine a child's eligibility.
 Other data sources necessary to explain
causes of malnutrition (UNICEF framework on malnutrition)

n
 Other data sources necessary to explain
causes of malnutrion
Although the procedures for this additional
assessment is not nearly as standardized as the
procedures used for anthropometric assessment,
methods may include
• food security analysis,
• food market analysis,
• key informant interviews,
• focus groups,
• targeted observation,
• secondary data review, and others.
 Surveillance (e.g. Nutritional)
Anthropometric data may be collected
by nutrition surveillance.

The most common form of surveillance

is collection of data from routine
growth monitoring programmes in
maternal-child health or primary care
clinics. 
 Surveillance (def)
Systematic ongoing collection, collation, and analysis of
data and the timely dissemination of information to those
who need to know so that action can be taken.
-- World Health Organization
OR
The ongoing systematic collection, analysis, and
interpretation of health data, essential to the planning,
implementation, and evaluation of public health practice,
closely integrated with the timely dissemination of these
data to those who need to know.
-- U.S. Centers for Disease Control and Prevention
 4. Health status - measures
can also be measured by more general morbidity and "quality of
life" questionnaires. Perhaps the most widely used questionnaire
has been the Medical Outcomes Study Short Form (SF-36) .
This includes scales to measure
1.Physical functioning,
2. Role functioning,
3. Bodily pain,
4. Mental health, and
5. General health perceptions.
The SF-36 scales have been widely used in clinical research
in a wide variety of populations to assess overall health status.
 5. EXPOSURE DATA SOURCES
Methods of external exposure measurement include
• personal interviews or self-administered questionnaires
(completed either by the study participant or by a proxy
respondent),
• diaries,
• observation,
• routine records,
• physical or chemical measurements on the environment,
or physical or chemical measurements on the person.
 6. Personal measurements
Measurements on the person can relate either
to
i. exogenous exposure (e.g. airborne dust) or
ii. internal dose (for example- plasma
cotinine);
iii. the other measurement options (for
example, questionnaires) all relate to
exogenous exposures.
 Common practice
Traditionally, exposure to most non-biological risk
factors (e.g. cigarette smoking) has been measured
with questionnaires (either self-administered or
interviewer-administered), and this approach has a
long history of successful use in epidemiology.

Questionnaires may be combined with environmental

exposure measurements (for example, pollen counts,
industrial hygiene surveys) to obtain a quantitative
estimate of individual exposures.
 SOURCE OF
DATA/INFORMATIO
N IN
EPIDEMIOLOGY
 Exposure variety
1. Demographic factors: - such as age, gender and
ethnicity can be obtained in a straightforward manner from
routine health care records or with questionnaires.
2. Questionnaires: - Traditionally, exposure to most non-
biological risk factors (for example, tobacco smoking) has
been measured with questionnaires, and this approach has
a long history of successful use in epidemiology.
Questionnaires may be self-administered (for example,
postal questionnaires) or interviewer-administered 
 Exposure variety
3. Environmental measurements and job-
exposure matrices: -
In many studies, for example, community-based
case-control studies, questionnaires are the only
source of exposure information. However, in some
instances, particularly in occupational studies,
questionnaires may be combined with environmental
exposure measurements (for example, industrial
hygiene surveys) to obtain a quantitative estimate of
individual exposures.
 Exposure variety
4. Quantified personal measurements: -
In some instances, quantified personal exposure
measurements may be available, for example, in
radiation workers wearing radiation dosimeters
(Checkoway et al, 1989).
This information is invaluable when it is available, but
it is rarely available for historical exposures with
the exception of some industries such as the nuclear
power industry. Such information can of course be
radiation dosimeters
 Exposure variety
5. Biomarkers: -
• More recently, there has been increasing emphasis on the use of
molecular markers of internal dose.
• In fact, there are a number of major limitations of currently
available biomarkers of exposure, particularly with regard to
historical exposures.
• For example, serum levels of micronutrients reflect recent rather
than historical dietary intake.
• Some biomarkers are better than others in this respect (particularly
markers of exposure to biological agents), but even the best
markers of chemical exposures usually reflect only the last few
weeks or months of exposure.
 DATA SYSTEMS
• TWO TYPES OF DATA SYSTEMS:

 ROUTINE: Health information systems

 NON-ROUTINE:
- Surveys
- Research programs

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 ROUTINE DATA SOURCES

• Such as HIS (Health Information

System) and its subsystems that are
collected as part of an ongoing system

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 CHARACTERISTICS OF HIS
• A health system is not a static phenomena. It is in a
continuous process of change due to pressures from both
outside and within the system

• HIS is an integral part of the health system

• HIS generates the data to measure the change of a

health system

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 Examples -- HIS SUB-SYSTEMS
• Epidemiological surveillance
• Routine service reporting
• Special program reporting systems
• Administrative systems
• Vital registration systems
• Demographic Surveys
• Censuses
• Special studies/Program Evaluations

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 NON-ROUTINE DATA SOURCES

Such as
• DHS
• Special Surveys (Health indicator surveys)
• Program or Project Evaluation
• Clinical trials
• Epidemiological Surveys (Descriptive/Analytical)

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 LEVELS OF INFORMATION WITHIN THE IDENTIFIED
DATA SOURCES
The next quest is to identified the level of information one is
interested in within the identified Data sources
• FIVE LEVELS OF DATA:
1. Policy or Program level
2. Population level
3. Service Environment level
4. Client level
5. Spatial/Geographic level

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 1. POLICY/PROGRAM LEVEL
• This is policy/legislation formulation level,
Sources :
- Official legislative & administrative documents
- National budgets or other related data
- Policy inquiries
- Reputational rankings (program efforts scores)
• Tools:
- Indexing questionnaires (for country specialists and rankings)
- Special/contract studies

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 2. FACILITY LEVEL

Facilities-services, infrastructure, etc.
Audits/inventories


Facility surveys



Health care providers, other staff
Performance reviews, competency measures


Training records


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 3. POPULATION LEVEL
Where you need to know the size/composition of a population.
Sources such as:
- Population census bureau; - Sentinel surveillance systems
- Vital statistics system (birth & death certificates)
- Sample households or individuals; - Special population samples
(demographic/occupational group, or geographic sector)
Tools:
- Birth/Death certificates
- Census questionnaires
- Household/Individual Special Surveys
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 4. SERVICE ENVIRONMENT LEVEL
This is a complex level requiring different types of data from
Sources such as:
- Administrative records (service stats, HMIS data, financial & transport
data)
- Service delivery point information (audit information, inventories, facility
survey data)
- Staff information (performance assessments, training records, provider
data, quality of care data)
- Client visit registers
Tools:
- Health Service Information Systems; - Facility Sample Surveys; - Facility
records; - Performance Monitoring Reports , ReQoL

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 5. INDIVIDUAL LEVEL
“Individual” in this context refers to a client, participant,
patient or documents related to a single person as can
be obtained from
• Sources such as:
- Medical records; - Interview data; - Case Surveillance (epidemiology of
disease)
- Provider-Client interactions
Tools:
- Case reports; - Survey questionnaire; - Client register analysis
- Patient flow analysis; - Direct observation

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 INDIVIDUAL LEVEL
Can measure “program exposure” represented by utilization, as
well as service experience, quality of care/service delivery,
disease surveillance
– Is the volume increasing?
– What is the service mix?
– Who are the clients?
• How does it vary by public/private sector?
– What are their consultation experiences?
• Would they return/recommend the service?
Other questions?

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 INDIVIDUAL LEVEL
1. Client Exit Interviews
2. Case surveillance (epidemiology)
3. Provider-client observation
4. Service Delivery Point records and
registers.
5. Patient-flow analysis
6. Others?
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 6. GEOSPARTIAL/GEOGRAPHIC
LEVEL
These are modern and specialized
sources that include:
- Cadastral maps (land ownership)
- Land Demarcation Department with:
a) - Satellite Imagery and Area Photography
b)- Digital Line Graphs and Elevation Models
Tools:
- Global Positioning System (GPS)
- Computer Software Programs (GIS)

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 MEASUREMENT TOOLS
• Facility audits, Inventories
• Facility surveys
• Provider interviews
• Provider-client observation
• Provider training records
• Situational analysis
• Others (GPS stored Data/Dtabases)
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 Further reading materials
SOMALILAND IN FIGURES
WHO AND AGENCIES.

12/13/21 62