Health Information Flashcards
what is data
raw facts and observations
what is information
data processed to be meaningful, or interpreted and communicated/understood by the recipient
what is GDPR
general data protection regulation
EU framework to regulate data collection
people must give unambiguous consent to processing of personal info
what is routine data
already exists, collected through on-going data collection systems
not collected specifically to answer any particular question
what is demographic data
conducted every 10 years, ONS population estimates
NHS administrative data
what is health event data
birth and death registrations - required by law
what are uses of mortality data
analyses by age sex marital status occupation
hypothesis generation and testing
surveillance of public health
what are strengths of registration data
allows calculation of annual population estimates between census points
calculate life expectancy
very high capture rate
what is self-reported health
on going surveys
general lifestyle survey e.g
what is the GLS
general lifestyle survey
since 1971
monitors smoking prevalence, info on housing, families, pensions, health, income, drinking
what info does the hospital episode statistics (HES) have
all admissions, out-patient and A&E attendances at NHS hospitals
what is CPRD
clinical practice research datalink
provides anonymised primary care records for public health research
longitudinal follow up
what do registers contribute to
medical knowledge and improving healthcare and reduction in disease risk in the UK
what is am advantage of registers
detailed, longitudinal info, patient identifiers - can link datasets
what is a disadvantage of registers
require substantial resources (financial and staff) - confidentiality, completeness and accuracy
what are the uses of registers
PATIENT CARE - monitoring high risk groups, managing demands, auditing treatment
PUBLIC HEALTH - planning provisions
RESEARCH - hypothesis testing
what is the northern region young persons malignant disease registry (NRYPMDR)
all cases of cancer diagnosed since 1968 in north in ppl under 25
diagnosis, follow up, birth certificate info
what are new sources of data
- UK BIOBANK - 500,000 volunteers , longitudinal
- electronic health records
- social media/apps
what are advantages of routine data
useful for generating hypotheses
easily accessible
regularly updated
data on large number of individuals
provide valid information
what are disadvantages of routine data
temptation to use them regardless of completeness, accuracy, relevance and timeliness
inflexible
differing age breakdowns and geographical boundaries
how should a questionnaire be designed
is it reliable and valid?
clear and simple language
designed to faciliate recall
include overlapping questions as a check
closed/open-ended questions
what should you do first when designing a questionnaire
pilot it
what is the FAIR principle for data storage consideration
findable accessible interoperable re-useable
