1. 1 Cohort management and the Secondary Uses Service (SUS) Nirupa Dattani Office for National Statistics

2. 2 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)

3. 3 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

4. 4 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

5. 5 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

6. 6 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

7. 7 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

8. 8 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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10. 10 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

11. 11 Applications Payment by results Benchmarking and performance assessment Public health activities Patient safety activities Research and development

12. 12 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

13. 13 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)

14. 14 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

15. 15 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

16. 16 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