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The Data Linkage and Extract Service 
Dave Cronin, Business Change Lead
What is it? 
• Unique service enabling new insights into patient care 
• Adds significant value to individual sets of data by 
combining and matching them in a secure environment 
• Flexible range of products that can be tailored to meet your 
data needs 
• Ground breaking development programme, making 
available new datasets, subject to robust information 
governance controls
Types of data 
1. De-identified data for publication 
Accessed via the HSCIC catalogue: 
www.hscic.gov.uk/searchcatalogue 
2. De-identified data for limited disclosure or 
access 
Accessed via the Data Linkage and Extract Service 
subject to IG controls: www.hscic.gov.uk/dles 
3. Personal confidential data 
Accessed via the Data Linkage and Extract Service 
subject to IG controls: www.hscic.gov.uk/dles
Data Linkage and Extract Service products 
• Tabulations 
• Standard extracts 
• Bespoke extracts 
• Bespoke data linkage 
• Patient status and tracking
Examples of data available 
• Hospital Episode Statistics 
• Mental Health Minimum Data Set 
• NHS Registration Data from the Personal 
Demographics Service 
• Secondary Uses Service Payment by Results 
• Patient Reported Outcome Measures 
• Diagnostic Imaging Dataset 
• Mortality Data from the Office for National Statistics 
• Cancer Data from the Office for National Statistics
Routinely Linked Data Sets 
• Hospital Episode Statistics linked to Mental Health 
Minimum Data Set 
• Hospital Episode Statistics linked to Patient Reported 
Outcome Measures 
• Hospital Episode Statistics linked to Mortality Data from 
the Office for National Statistics 
• Hospital Episode Statistics linked to the Diagnostic 
Imaging Dataset
In the pipeline 
Jan 
2014 
Dec 
2016 
Quarter 1 
2014/15 
Primary Care 
to HES 
linkage 
Quarter 1 
2015/16 
CAMHS to 
MHMDS 
linkage 
CAMHS to 
HES linkage 
Quarter 3 
2015/16 
Child Health 
to HES 
Quarter 2 
2015/16 
Maternity to 
HES linkage 
CAMHS data 
available 
Child Health 
data available 
Maternity 
data available
Ensuring appropriate access 
Application guidance and forms available 
at: www.hscic.gov.uk/dlesaac 
We review requests and assess: 
• The legal basis to permit the processing and subsequent 
release of data. 
• The legal basis for the customer to access the data. 
• The level and source of data being used and released. 
• The purpose and intended reuse of the data. 
• The security assurance and controls in place. 
• Advise/facilitate any further approvals.
Case Study - The ‘Million Women’ Study 
Oxford University 
• A national study of women’s health involving more than 
one million UK women aged 50 and over 
• Partnership between Cancer Research UK and the NHS 
with funding from the Medical Research Council and the 
Health and Safety Executive 
• Since 1998 we have: 
• Traced and followed 1,251,920 women 
• Patient Tracking reporting on; cause of death, cancer, 
NHS registrations. 
• Providing over 294,000 event notifications
Case study – Do hormonal treatments for assisted reproduction 
increase risk of cancer of mortality? A national cohort study 
The Institute of Child Health, University College 
London 
• To investigate the relationship between hormonal 
treatment and site specific risks of cancer incidence, 
especially reproductive related cancers, in relation to 
type of treatment, duration and age of exogenous 
hormone exposure. 
• To establish if there is any link between cause-specific 
mortality and ART exposure. 
• The HSCIC provided a de-identified output to the 
researcher 
• Patient Status reporting on; cause of death, cancer, NHS 
registrations and HES data.
Find out more 
0845 300 6016 
www.hscic.gov.uk/dles 
@hscic 
@HSCICOpenData

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HSCIC Data Linkage Stakeholder Forum Nov 2013: The Data Linkage and Extract Service

  • 1. The Data Linkage and Extract Service Dave Cronin, Business Change Lead
  • 2. What is it? • Unique service enabling new insights into patient care • Adds significant value to individual sets of data by combining and matching them in a secure environment • Flexible range of products that can be tailored to meet your data needs • Ground breaking development programme, making available new datasets, subject to robust information governance controls
  • 3. Types of data 1. De-identified data for publication Accessed via the HSCIC catalogue: www.hscic.gov.uk/searchcatalogue 2. De-identified data for limited disclosure or access Accessed via the Data Linkage and Extract Service subject to IG controls: www.hscic.gov.uk/dles 3. Personal confidential data Accessed via the Data Linkage and Extract Service subject to IG controls: www.hscic.gov.uk/dles
  • 4. Data Linkage and Extract Service products • Tabulations • Standard extracts • Bespoke extracts • Bespoke data linkage • Patient status and tracking
  • 5. Examples of data available • Hospital Episode Statistics • Mental Health Minimum Data Set • NHS Registration Data from the Personal Demographics Service • Secondary Uses Service Payment by Results • Patient Reported Outcome Measures • Diagnostic Imaging Dataset • Mortality Data from the Office for National Statistics • Cancer Data from the Office for National Statistics
  • 6. Routinely Linked Data Sets • Hospital Episode Statistics linked to Mental Health Minimum Data Set • Hospital Episode Statistics linked to Patient Reported Outcome Measures • Hospital Episode Statistics linked to Mortality Data from the Office for National Statistics • Hospital Episode Statistics linked to the Diagnostic Imaging Dataset
  • 7. In the pipeline Jan 2014 Dec 2016 Quarter 1 2014/15 Primary Care to HES linkage Quarter 1 2015/16 CAMHS to MHMDS linkage CAMHS to HES linkage Quarter 3 2015/16 Child Health to HES Quarter 2 2015/16 Maternity to HES linkage CAMHS data available Child Health data available Maternity data available
  • 8. Ensuring appropriate access Application guidance and forms available at: www.hscic.gov.uk/dlesaac We review requests and assess: • The legal basis to permit the processing and subsequent release of data. • The legal basis for the customer to access the data. • The level and source of data being used and released. • The purpose and intended reuse of the data. • The security assurance and controls in place. • Advise/facilitate any further approvals.
  • 9. Case Study - The ‘Million Women’ Study Oxford University • A national study of women’s health involving more than one million UK women aged 50 and over • Partnership between Cancer Research UK and the NHS with funding from the Medical Research Council and the Health and Safety Executive • Since 1998 we have: • Traced and followed 1,251,920 women • Patient Tracking reporting on; cause of death, cancer, NHS registrations. • Providing over 294,000 event notifications
  • 10. Case study – Do hormonal treatments for assisted reproduction increase risk of cancer of mortality? A national cohort study The Institute of Child Health, University College London • To investigate the relationship between hormonal treatment and site specific risks of cancer incidence, especially reproductive related cancers, in relation to type of treatment, duration and age of exogenous hormone exposure. • To establish if there is any link between cause-specific mortality and ART exposure. • The HSCIC provided a de-identified output to the researcher • Patient Status reporting on; cause of death, cancer, NHS registrations and HES data.
  • 11. Find out more 0845 300 6016 www.hscic.gov.uk/dles @hscic @HSCICOpenData