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The Scottish Health Informatics Programme
Health Statistics User Group
Frank Sullivan FRSE, FRCP(Glas.), FRCGP
NHSTayside Prof of R&D in GP &1y care Director Health Informatics Centre
Deterministic linkage
DentalDentalHospitaHospital SMRl SMR
CHNo
Primary Primary CareCare
Lab Lab DataData
PharmaPharmacycy
Social Social ServicesServices
InvestigatioInvestigationsns
ScreeninScreeningg
Community Health Number
Date of BirthDate of Birth SexSex ChecksumChecksum
28 12 57 28 12 57 02 02 55 00
Sequence
Record-Linked DataCompleting the Jigsaw
CHNoHospitHospitalal
Social Social ServiceService
ss
PharmacPharmacyy
Lab Lab DataData
DentalDental
InvestigationInvestigationss
ScreeniScreeningng
GPGP
A&E
Maternity
BIRTH
DEATH
Neonatal Record SMR11
Child health surveillance
Immunisation
GP consultations
Dental SMR13
Out patients SMR00 Hospital Admissions SMR01
Mental Health SMR04
Prescribing Screening
Community care SMR50
Cancer registrations SMR06
Cancer registry
Scottish data from cradle to grave …
Navigation• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Navigation• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Who we are
Our funding comes from:
Universities of Dundee, Edinburgh, Glasgow and St Andrews and the Information Services Division of NHS Scotland
Governance
Scientific Management Group
SHIP Programme Manager
InternationalAdvisory
Board
Core Programmes
ResearchProgrammes
• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
The present
Linkage of a national diabetes dataset (SCI-DC) to a a datamart of Scottish Morbidity Register (ACaDMe)
• R&D approval from each board– 8 page form, covering letter, CV, proposal, sponsor letter, funder
letter
• Ethics approval 23 page form • PAC approval 11 pages• 14 Caldicott guardian approvals
– Calidcott guardians difficult to identify– Took 4 months to get all replies– many needed chasing, 5 requested further information
We aim to:Create a research portal for EPRs already held by NHS Scotland that will provide rapid, secure, access to the type of data that clinical scientists require.
We aim to:
Develop and evaluate systems that work across institutional boundaries to allow linkage between large, federated, third party research datasets and the NHS research portal.
• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Core Programmes
C1:Provisioning
Datasets
C2:Gov-
ernance
C3:Engaging
Researchers
C4:Engaging
ThePublic
C1: Provisioning DatasetsAims• To create a research portal for EPRs already held by NHS
Scotland, the Scottish Health Information Service for Research (SHIS-R).
• To develop and evaluate innovative technical approaches that allow linkage between large, federated, third party research datasets between themselves and with SHIS-R.
• To develop and evaluate systems that work across institutional boundaries with adequate data manipulation and statistical functionality that provide rapid, secure, access to the type of data that clinical scientists require.
C2: GovernanceAimTo analyse the ethico-legal and cultural challenges associated with the secondary use of EPRs with a view to mapping the elements necessary to contribute to an optimal governance regime
•3 dimensions:o Scottisho Internationalo Interdisciplinary
C3: Engaging Researchers
Aims• To host a biennial conference “Exploiting Existing Data
for Health Research” . It has 5 themes:o The value of record linkage in health researcho Record linkage for health care improvemento Longitudinal record linkageo The methodological challenges of record linkageo Confidentiality, disclosure and ethical issues
• To develop and deliver training programmes and workshops for EPR research
C4: Public EngagementAims• To synthesise existing evidence on citizens attitudes towards
sharing personal data for research.
• To generate new evidence on the acceptability of different levels of data sharing under varying conditions.
• To engage the wider public with the aims and outcomes of the SHIP through specific consultation exercises.
• To link the public engagement activities into the development of governance frameworks (C2).
• To examine novel methods of making health data available to the public.
• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Research Programmes
RP1: EPRSupport of Clinical trials
RP2: NationalEpidemiology
RP3:Pharmaco-vigilance
RP4: Demographic, Socio-Economic& Environmental Data Linkage
RP1: Support of Clinical TrialsAimTo evaluate how EPRs can best support the conduct of a
range of clinical trials
• Can we identify eligible patients?
• Can we extract follow-up information from GP records?
• Can we get endpoints from routinely collected data?
RP2: National EpidemiologyAimTo perform epidemiological studies on a national scale
and use the information to estimate current and future health costs using diabetes as an exemplar.o Develop risk engines for CVD in diabetes to inform statin
prescribingo Use retinopathy data to look at screening intervalso Explore glycaemic control and CVDo Explore novel associations between diabetes and other
diseaseso Modelling current and future diabetes care costs
RP3: Pharmacovigilance
Aim• To link community prescribing data to EPRs to
demonstrate the feasibility of national pharmacovigilance
o using longitudinal datasets that link drug exposure and morbidity to discover previously unknown drug effects
o developing novel methods of analysis and comparing them with traditional approaches Variational Bayes Algorithms
Year 2 of RP3
• Development of Specific analytic tools and software for supervised learning (classification)
• Development of Specific tools for unsupervised learning (clustering)
• Definition of specific ADR hypotheses to test • Definition of the specific drugs to include in
unsupervised inference of likely ADRs and pleiotropic effects
• These tools will exploit several different kinds of contrast including survival analyses, case cross over analyses case control etc.
RP4: Demographic, Socio-Economic and Environmental Data LinkageAims• to link information given by respondents in genetic studies
back through time using the records of births, marriages and deaths since 1855. o Complex genealogies are being built up which will be used to look at
genetic effects in epidemiological studies
• to estimate the effects of exposure to various environmental agents on health by linking environmental pollution data to hospital admissions and the Scottish Longitudinal Study (SLS)
• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Formulating the plans• Review of existing practice (completed August 2010)
– Information governance of use of patient data in medical research in Scotland: current and future scenarios
• Public engagement– 8 focus groups by March 2011
• Expert working groups (final report 11/11/10)– On Governance, IT and Administration
• Consultation with key stakeholders– Secure data linkage & access workshop 09/02/10– Governance & public engagement workshop 13/12/10
Improving Governance
• Increasing transparency & reducing uncertainty
• Setting standards: Principles & Best Practices
• Clarifying Responsibilities: Data Flows & Data Controllers
• Seeking buy-in from stakeholders
Good Governance Framework• Principles: foundational starting points for deliberation and action• Best practice: instances of implementation of principles to a high
standard• Content:
• Public interest and the importance of research• Privacy/Anonymisation/Consent/Data Protection• Authorising/advisory bodies• Governance/Access• Trusted Third Parties (where appropriate)• Clinical Trials• Cross-sector sharing and sharing agreements• Public engagement and benefit sharing
Public Interest / Personal Privacy
Scientifically sound and ethically robust research is in the interest of protecting the health of the public.
Every effort should be made to consider and minimise risks of identification to data subjects
Consent
Consent
Anonymisation Authorisationand/ or
yes
no
The Vision• Aims to improve accessibility and provide metadata
• Streamlined approvals process for health data
• Work with SAHSC to provide local access for researchers at SAHSC nodes
• A website for researchers with details of the process and available data
• A national indexing service
Proposed Infrastructure• National Indexing Service
– located in NHS NSS
• National Safe Haven– Separately located in NSS
• Linkage Agent– Within the national safe
haven
• Model to be mirrored at SAHSC nodes
• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Safe Havens
Thomas and Walport Data Sharing Review (2008):
“environments for population based research and statistical analysis in which the risk of identifying individuals is minimised”
Safe Projects
A committee decides whether the access request is for a valid statistical purpose
Safe People
Researchers may have to be:
• Attached to a known institution
• Asked to attend a course
• Bound by a strict code
• Subject to sanctions
• Global recoding– Combining categories
• Top and bottom recoding– For normal distributions
• Record swapping– Interchanging sensitive values between records
• Post Randomisation Method– Misclassifies categorical data according to a predetermined
probability mechanism eg 20% chance that a male is female
• (Over)imputation– Values randomly deleted and likely values from similar donor
records are substitued
Safe Data
Safe SettingsDumb terminal prevents
removal of data:• No memory stick• No CD or DVD• No internet
Can be expanded to the user’s own computer using eg Citrix or Terminal Services.
Safe Outputs
Statistical Disclosure Control
• Results produced may be checked by officers of the safe haven to make sure they do not contain any disclosive results.
• Who we are• Aims of SHIP• Core programmes• Research programmes• The plan• Safe havens• The detail
Governance Safe Guards
Aggregate non-disclosive data
Data Archive
Disclosure Control
Indexing Service
University dataset
SCI DCISD
Secure Access Facility
Privacy Advisory Committee(approval of linkage requests)
Data Source 1 Data Source 2 Data Source 3
SAFE HAVEN
I’d like to link some data
LinkageAgent
Project work space
Key coded data only
Linkage part 1
Local IDsStudy numbers
Local IDsStudy numbers Indexing
Service
Datasource 1
Local IDsNamesAddressesDates of birth
Datasource 2
Local IDsNamesAddressesDates of birth
Linkage part 2
Study numbersPayload data
Study numbersPayload data
Safe Haven
Study numbersPayloaddataPayloaddata
Datasource 1 Datasource 2
Exploiting Existing Data for
Health Research
International Conference
9-11th Sept '11University of
St Andrewswww.scot-ship.ac.uk
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