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Cohort management and the Secondary Uses Service (SUS)

Nirupa Dattani Office for National Statistics

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Cohort management using National Health Service Central Register (NHSCR)

• NHSCR computerised in 1991 and the database is known as Central Health Register Inquiry System (CHRIS)

• Contains details of all patients registered with a GP since 1 January 1991

• New entries are created with new births from the Registrars and for new registrations with GPs (eg immigrants)

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Cohort management using NHSCR (2)

Updates on CHRIS

• Deaths• Name changes• Immigrations• Enlistments to armed forces• Adoptions• Entry into Service Medical Officer Care• Cancer registrations

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Cohort management using NHSCR (3)

CHRIS record contents

• Surname and forename(s)• Sex• Date of birth• Health authority and date of registration• Date and place of death• NHS number

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Cohort management using NHSCR (4)

Medical research studies

• ONS provides medical research service by ‘flagging’ or ‘tracing’ study members on the NHSCR

• Other services provided include ‘list cleaning’, vital events outputs and mail out services

• www.statistics.gov.uk/about/services/medicalresearch

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NHS Strategic Tracing Service (NSTS)

• It’s a national (England and Wales) database of people, places and NHS organisations

• NHS staff can access patient information such as names, address, date of birth, GP name and address details and patient’s NHS number

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NHS Care Records Service

A single electronic health care record for every registered NHS patient in England:

• Life-long history of patients’ health and care information regardless of where, when and by whom they were treated

• Provide healthcare professionals with immediate access to medical records and care notes

• Supporting the NHS to collect and analyse information• Secure access and audit trails

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Services supported

• Personnel Demographic Service (PDS) will include basic demographic information such as name, address, date of birth, date of death, sex, GP details.

• The PDS exists to support direct patient care in real time, enabling access to and linkage of care records

• Secondary Uses Service (SUS) exists to support uses of care record data for purposes other than direct patient care

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Secondary Uses Service

• The central repository of health data for secondary uses

• Copy of PDS will be held on SUS• Most data collected or derived from clinical systems• SUS will have all NHS related activity and other non-

patient record based data• Concentrating on coded, textual data• Provide the tools and services for an effective and

secure working environment for analysis and reporting

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Applications

• Payment by results• Benchmarking and performance assessment• Public health activities• Patient safety activities• Research and development

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Benefits of SUS

• Consistent data collection across the country• Comprehensive coverage of all NHS-commissioned

care• Cohesive information collection enabling linkage of

patient data from different sources• A secure environment in which patient confidentiality

is maintained

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Cohort management in SUS (1)

The following systems will be decommissioned and their functions incorporated in SUS :

• The National Strategic Tracing Service (NSTS)

• The Central Health Register Inquiry System (CHRIS) operated by the NHS Central Registry (NHSCR)

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Cohort management in SUS (2)

Back office functions:

• Duplicates – where 2 records are present for the same person• Confusions – where 2 patients are using the same record• Changes of identity – for example adoptions, witness protection,

gender reassignment.• De-registrations from the NHS – emigration from England or exit

to MoD• Resolution of unmatched civil registrations – births and deaths

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Cohort management in SUS (3)

Issues:

• NHSCR covers England and Wales while SUS is for England only

• Cross boundary flows to Scotland• Prisoners or psychiatric patients not registered with a

GP

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Summary

• Study population can be traced at NHSCR on the CHRIS through medical research

• CHRIS and NSTS will be decommissioned when the current systems are migrated to PDS

• Issues with Welsh residents currently covered in medical research studies as SUS is for England only.

• Issues with cross border flows with Scotland• SUS will be a comprehensive database of all NHS

activities for patients in England