the use of patient data for research purposes
DESCRIPTION
A lecture for the MSc in Health Informatics at the UCL Centre for Health Informatics & Multiprofessional Education (CHIME).TRANSCRIPT
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The secondary use of patient data for research.
Dr. Spiros DenaxasClinical Epidemiology
Epidemiology and Public HealthUCL Medical School
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Structure
Epidemiological studiesPatient data enhancing existing epidemiological
studiesPatient data for performing in vitro epidemiological
studiesThe future of large-scale epidemiological studies
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Learning outcomes
Epidemiology definedTimeline of cohort studiesChallenges using clinical data for researchEHR linkingValue of linking different data repositories
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Clinical epidemiology
“The application of epidemiological knowledge, reasoning, and methods to study clinical
issues and improve clinical care. Research often addresses aetiological, diagnostic,
therapeutic, and prognostic medical issues, is conducted in clinical settings led by
clinicians and had patients as the subjects of the study.”
J. M. Last, A Dictionary of Epidemiology
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Coronary Heart Disease (CHD)
Coronary Heart Disease (CHD) is the leading cause of death in the UK
~180.000 CHD deaths in the UK p.a.Collective term for diseases which occur due to
atheroma building up in artery walls.Prevalence: ~2.7MRisk factors: smoking, diabetes, obesity, diet,
physical activity, SES, mental health
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Stable angina
Early manifestation: angina (chest pain)Symptoms: chest pain, feeling of heartburn,
palpitations, shortness of breathTriggered by:
− Exercise− Cold weather− Stress
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Myocardial Infarction (MI)
Myocardial Infarction: Necrosis of the myocardial tissue due to ischaemia due to a thrombus
Symptoms: gripping chest pain, dizziness, overwhelming anxiety, shortness of breath
~124.000 MI’s in the UK per year (BHF, Statistics 2010)
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(BHF, Statistics 2010)
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Wisdom
“It is only by collecting data and using them that you get sense”
William Osler, Aequanimitas, 1928
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Timeline of disease
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Start with a healthy population
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Some people drop out
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Wait
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Some people get diagnosed
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Some people get events (and some die)
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Gathering as much as possible
Medical screening clinics− Anthropomorphic measurements− Blood / urine samples− Other measurements
Repeat questionnaires− Life style− SES− Activity
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Smoking
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Only one problem
"The problem with quotes on the Internet is that it is hard to verify their authenticity" - Abraham Lincoln
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Self-reporting data
People forget − or chose to forget
TemporalitySubjective by definitionDifferent people -> different thresholdsAscertainment
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Periodontal disease
Seven cohorts, multiple papersRelative risk 1.24 (95% CI 1.01-1.51) to 1.34 (95%
CI 1.10 – 1.63)
Humphrey LL, Fu R, Buckley DI, Freeman M, Helfand M. Periodontal disease and coronary heart disease incidence: a systematic review and meta-analysis. J Gen Intern Med. 2008.
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Primary care data
First line of care in the UK: the GPCentered around consultationsDiagnostic information, prescriptions, referrals,
additional measurementsInformation is recorded using a standard clinical
terminology system (Read)
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Sample primary care data
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Advantages
Majority of people registered with GPData collected at large scaleData recorded at regular intervalsGreater data granularityHigh data completeness on comorbiditiesIntroduction of QoF
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Problems: conflicting information
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Problems
Lack of streamlined approach to obtain dataHow?
ConflictsMeasurement error (BP,HR)Information error (aspirin)
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Pathway of disease
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Secondary care data
Hospital Episode Statistics (HES)Data warehouse of all admissions to NHS
hospitalsInformation is recorded using the International
Classification of Diseases ontology 10th revision (ICD10)
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Sample secondary care data
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Secondary care data: advantages
Extremely high data completenessComplete picture of admissions and re-
admissions to secondary careProvide information where not possible to collect
(admission for severe depression episode)
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Secondary care data: disadvantages
Data collected for administrative purposesCoding of individual entries is not done exclusively
by doctorsCoding standards change over time
− ICD9 to ICD10− ICD10-CM− SNOMED-CT
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Pathway of disease
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Registries
“The collection of information for its own sake is of doubtful value unless it is acted upon. Community registers should not become the equivalent of village war memorials.”
Hugh Tunstall Pedoe 1978
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Myocardial Ischaemia National Audit Project (MINAP)
Established in 2000All hospitals in England and Wales submit data~600.000 records~120 fields on medical history, medication,
admission and dischargeInitially setup for auditing purposes
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Myocardial Ischaemia National Audit Project (MINAP): advantages
Coronary phenotype information not available elsewhere
ST elevation MI (STEMI)Non ST elevation MI (nSTEMI)
Added flexibility (markers, ECG etc)
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Myocardial Ischaemia National Audit Project (MINAP): disadvantages
Data collected and recorded on a voluntary basisLess severe cases (nSTEMI) are not always
submitted due to lack of resources (MINAP Public Report 2011)
On its own, provides little information on pre-event pathway
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Registries
International (Sweden RIKS-HIA)In registry randomization Harmonization between types
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Pathway of disease
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Office for National Statistics (ONS) Mortality Data
Medical Research Information Service (MRIS)Current status service
− Date and place of death− Causes of death (underlying and primary)− Occupation
Cause of death certified by medical practitioner
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Office for National Statistics (ONS) Mortality Data
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Mortality data: advantages
Enable (cheap) long term follow up and establish cause of death.
Provide information where not ethical to collect (cause of death inquiry from spouse)
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Pathway of disease
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Rare disease?
CHDPrevalence of 2.7M (BHF)
Creutzfeldt–Jakob disease (CJD)1 case per million per year (CDC)
Other?
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Novel electronic health record linkages: CALIBER
Cardiovascular disease research using linking bespoke studies and electronic health records.
Bring everything together by linking multiple sources
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CALIBER
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CALIBER - validation
Two distinct steps
Identify patients
Demographics and timing
Identify events
Timing and consistency
Severity
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Problems with EHR linking - governance
Multiple stakeholders
Different methods of access
Primary care
Attitude towards linking
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Problems with EHR linking - data
Unequal granularity between sources
Coding
Timing issues
Resurrections
Conflicting information
Shifting patterns
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Not just for CHD
Bespoke cohorts can be enhanced through linking− Ascertainment − Validation
Similar approaches work for other diseases− Cancer registries− HIV registries− Infection / HPA
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So much more…!
Plethora of information enclosed within hospital EPR systems− ECG data− Imaging, sound− Routine blood results− A&E records− Ambulance records
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So much more…!
Plethora of information contained in disparate information systems− Pension records− Criminal records− National Treatment Agency− Port Health Screening datasets
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Conclusions
Routinely collected data facilitates research which might have previously been impossible to perform
Data is not perfect, must be treated with cautionThe future is in linking multiple disparate sources… and amalgamating different disciplines together
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Thank you.