The Scottish Medical Record Linkage System: Past, Present and Future

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The Scottish Medical Record Linkage System Past,
Present and Future
David N Clark Information Services Division - NHS
Scotland Friday 18th September 2009 Exploiting
Existing Data for Health Research St Andrews
University
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The Scottish MRL System

• Information Services Division (ISD Scotland)
• History of MRL in Scotland
• Methodology
• Outputs
• Current Status
• Future Plans

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ISD Groups Programmes
Women and Childrens Health CancerClinical
GovernanceSubstance MisuseQuality
ImprovementWaiting TimesCoronary Heart Disease
Stroke Mental Health Scottish Public Health
Observatory Long Term Conditions etc etc Record
Linkage
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National Data Flows
Primary Care Organisations
Dentists
Private Hospitals
Acute NHS Hospitals
Pharmacists
NHS Boards
G.P.s
English NHS
Hospices
Births Deaths
Health Departments
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Stakeholders/Customers

• Hospitals/Primary Care
• Health Boards
• GP Practices
• Scottish Executive
• Scottish Parliament
• Health Councils
• Local Authorities
• Public
• Charities
• Universities
• Students
• Private Sector
• Media

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History of MRL at ISD

• Late 1960s Familiarisation with early RL
  techniques (Newcombe) close contact with Oxford
  initiative.
• 1967-68 Hospital discharge records, cancer
  death registrations held centrally in
  machine-readable form and containing
  patient-identifying information.
• 1968-88 Phase 1 of MRL in Scotland approx. 50
  ad-hoc linkages completed for epidemiological
  purposes.

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History of MRL at ISD /contd

• 1989 Phase 2 begins creation of permanently
  linked national datasets.
• 1995 Clinical Outcome Indicators published.
• 2001 Enter SLA with Chief Scientist Office for
  funded research projects.
• 2003 Monthly production system of linked acute
  psychiatric hospital discharges/cancers/deaths.
  Data Warehousing (ACND).

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ISD MRL Training - 1989
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ISD MRL Training - 2009!
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Publications
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Commendation
Conclusion Probabilistic record linkage to
routine maternity records applied to
population-based cohort, using name, date of
birth and place of residence, can have high
specificity, and as such may be reliably used in
epidemiological research.
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Current Developments

• ISD Record Linkage Strategic Plan (2009-13)
• CHI-seeding Methodology
• ACaDMe
• SHIP SHIS-R

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Record Linkage Strategy

• Develop the use of CHI within the record linkage
  process
• Review, develop and productionise process for
  updating Linked Maternity and Neonatal Database
• Develop and provide training resources on linkage
  methodology and analysis tools
• Support projects funded by the
• Chief Scientist Office (CSO)
• Health Protection Scotland (HPS)
• Scottish Government E-care Programme
• Scottish Health Informatics Programme (SHIP) /
  SHIS-R
• other externally funded research projects
• Represent ISD, NHS Scotland within local and
  international networks, developing collaborative
  working relationships with other research bodies

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CHI-seeding Methodology

• Community Health Index (CHI) Population
  register of patients registered with a GP
  Practice
• Full coverage in Scotland since 1988
• Unique Patient Identifiers for 10 million
  patients
• Conformed ISD Datasets seeded with CHI
• Automated CHI-seeding on sufficient external
  datasets simpler more efficient process

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ACaDMe

• Acute, Cancer, Deaths, Mental Health Data Mart.
• New conformed version of Linked Dataset with
  patient dimension based on seeded CHI numbers
  rolling out to NHS Boards in 2009/10.
• Business Objects XI front-end.
• Added value data
• Population reference files
• Code descriptions
• Standard groupings (e.g. age, diagnosis,
  operation)
• Derived items (e.g. time to death)

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SHIP
Scottish Health Informatics Programme
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SHIS-R Vision Road Map

• Scottish Health Information Service for Research
• SHIS-R Project initiated to create infrastructure
  for access and linkage to national data.
• What types of things might academics want to do?
• Potential types of datasets
• Unlinked
• Linked
• Aggregated
• Interrogation of ISD datasets
• Anonymisation
• Passport System (Approved Training/Audit Trails)
• Safe Havens
• Governance relating to linkages between ISD
  datasets and/or ISD datasets and non ISD datasets
  
• Data linkage, transfer and storage
• MILA (Multi-Institutional Linkage and
  Anonymisation) Pilot
• CHI seeding
• Probability Matching

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Finally Acknowledgements(ISD Linkers Past
Present)

• James Boyd, Richard Dobbie, Andy Duffy, Andy
  Elders,
• Alan Finlayson, Mike Fleming, Susan Frame,
• Julie Gilbert, Kevin Greig, Lena Henderson,
• Leanne Hopkins, Laura Kelso, Steve Kendrick,
• Laura Marchbank, Kevin McInneny,
• Terry McLaughlin, Margaret McLeod, Carole
  Morris,
• Fiona OBrien, Chris Povey, Janey Read,
• Jacqui Russell, Cath Storey, Mary Sweetland,
• David Tennyson, David Walsh, Bruce Whyte,..
• and apologies to anyone omitted!