Health Information

Question 1

What is data?

Answer 1

Data are raw facts or observations (could be text, picture, sound, video) but have no value on their own

Question 2

What is information?

Answer 2

Data that have been processed so that they are meaningful;

Data that have been interpreted, communicated to and understood
by the recipient

Question 3

What is knowledge?

Answer 3

Knowledge is what is gained in the longer term when the impact and relevance of the information is ascertained

Question 4

How do we get from data to knowledge?

Answer 4

OBTAIN facts for data
INTERPRET data for information
SYNTHESISE info for knowledge
APPLY knowledge for wisdom

Question 5

How to create information?

Answer 5

Hypothesis

Where to get data?

Decide how to use and store the data.

Question 6

What information does epidemiology require?

Answer 6

Outcome AND exposure

Question 7

Where do we get appropriate information for an epidemiological study?

Answer 7

• Routine data/existing data
• Collect new data

Question 8

What is GDPR?

Answer 8

General Data Protection Regulation

EU framework to regulate the collection, processing and storage of personal data

Question 9

What are the Implications for obtaining consent from individuals to participate in research in GDPR?

Answer 9

• must give ‘unambiguous consent to the processing of personal information’
• must involve ‘clear affirmative action’ (no longer acceptable to have ‘opt-out’ consent)

Question 10

What is routine (existing) data?

Answer 10

Usually collected for statutory or administrative purposes

Not collected specifically to answer any particular question

Question 11

What types of demographic data?

Answer 11

Census and NHS

Question 12

What is a census?

Answer 12

• Conducted every 10 years
• ONS produces annual population estimates
• Data on everyone in a household

Question 13

What is NHS administrative data?

Answer 13

• NHS Digital holds information on every individual registered with NHS
• Generally only available to the clinical team caring for patients

Question 14

How is mortality data used?

Answer 14

• Analyses by age, sex, marital status, occupation, social class
• Analyses of mortality over time & place
• Hypothesis generation
• Hypothesis testing
• Monitoring/surveillance of public health

Question 15

What are the strengths of registrations?

Answer 15

• Allows calculation of annual population estimates between census points
• Birth and death rates
• Calculate life expectancy
• Very high capture rate

Question 16

What are the limitations of mortality statistics?

Answer 16

What about the chronic disease burden and non-fatal illnesses.

Question 17

What are some on-going self-reported health surveys?

Answer 17

*General Lifestyle Survey
*Health Survey for England
*National birth cohort studies
*Millennium Cohort Study

Question 18

What is general lifestyle survey (GLS)?

Answer 18

Annual cross-sectional survey since 1971

Collects info on housing, families, money, smoking and drinking.

Question 19

What is HES data?

Answer 19

Hospital episode statistics

All admissions, out-patient and A&E attendances at NHS hospitals

Question 20

What is Clinical Practice Research Datalink (CPRD)?

Answer 20

Provides anonymised primary care records for public health research

Longitudinal follow-up

High quality

Available for research

Question 21

What is a register?

Answer 21

A collection of data about patients with a specific condition – can be relatively small or national/international

Question 22

What are the advantages of registers?

Answer 22

Detailed

Longitudinal information

Patients identifiers

Question 23

What are the disadvantages of registers?

Answer 23

Require substantial resources (financial and staff)

Confidentiality;

Completeness

Accuracy

Question 24

What are the main uses on registers?

Answer 24

Patient care

public health

Research

Question 25

How are registers used in patient care?

Answer 25

* Regular review and recall * Structured care programmes * Monitoring high risk groups * Managing demand and regulating access * Auditing treatment

Question 26

How are registers used in public health?

Answer 26

* Surveillance * Planning healthcare provision * Monitoring health burden and impact of interventions

Question 27

How are registers used in research?

Answer 27

* Descriptive studies * Hypothesis testing

Question 28

What is the Northern Region Young Persons Malignant Disease Registry (NRYPMDR)

Answer 28

All cases of cancer diagnosed since 1968 in the Northern Region in people aged under 25 years of age

Question 29

What are some examples of epidemiological studies using NRYPMDR data

Answer 29

* Incidence and survival studies * Paternal occupation and risk of cancer * Clustering of cancer cases

Question 30

What are clinical notes?

Answer 30

* Non-invasive * Wide range of information * Depends on information recorded as to quality, usefulness and ease of access * Issues of record storage and consent

Question 31

What are the advantages of routine data?

Answer 31

* Useful for generating hypotheses * Easily accessible * Regularly updated * Inexpensive * Data on large numbers of individuals * Standardisation over time

Question 32

What are the disadvantages of routine data?

Answer 32

* Temptation to use them regardless of accuracy * Relatively inflexible * Differing age breakdowns, geographical boundaries

Question 33

How is new data collected?

Answer 33

Questionnaires

Question 34

What is a questionnaire

Answer 34

A set of printed or written questions with a choice of answers devised for a survey or statistical study.

Question 35

How to design a questionnaire?

Answer 35

* Is there a previously validated questionnaire in existence? * Clear and simple language * Designed to facilitate recall * Include overlapping questions as a check

Question 36

How are questionnaires analysed?

Answer 36

* Pilot it first * Quantitative * Qualitative

Question 37

What kind of bias arises in questionnaires?

Answer 37

* Recall bias * Inter-rater bias * Selection bias

Question 38

What is a clinical examination?

Answer 38

* Anthropometry * Clinical samples * Scans * Other examinations

Question 39

What is the purpose of diagnostic criteria?

Answer 39

Ensure all participants evaluated using same criteria

Question 40

What kind of bias arises in clinical examinations?

Answer 40

*Selection bias *Recall bias *Inter-rater bias

Question 41

What data types are there to be stored?

Answer 41

* Electronic * Paper records * Film records * Clinical images