1. Supplier Forum Update on the Secondary Uses Service Jeremy Thorp April 2008

2. What are “secondary” uses ?  A considerable amount of information is collected during the provision of care and supporting services  The primary purpose of this information is to support and improve individual patient care  However, this information is of value for many other purposes to support healthcare and providing appropriate steps are taken to meet confidentiality obligations, this information can legitimately be used to support these other purposes. These are called “secondary uses” [amended from CRDB Secondary Uses Report, August 2007]

3. Care Record Service (CRS) Reportng Service (SUS) NHS Choices Information available at the point of care Health record securely accessible to patients Personalised wellness support for patients & public Public access to quality information clinical improvement NHS business processes staff information How does it all fit together ?

4. IdentifiablePseudonymised or Anonymised Individual records Selected “lists” of records Immediate access Dynamic, up to date Workflow, rules based alerts Frequent abstracts Focus on classes of persons Time series Short time intervals Prospective indicators Focus on classes of persons Actual compared with expected (inputs, outcomes) Ongoing Indicators Focus on classes or cohorts of persons Disease, Service and population based Forecasting Periodic Operational Direct Care Commissioning Analysis / Service Planning Business Operations Strategic / Policy / Research Examples of characteristics of requirements Primary and Secondary Uses

5. Objectives of the Secondary Uses Service  To improve access to data to support the business requirements of the NHS and its stakeholders  To provide a range of software tools and functionality which enable users to analyse report and present this data  To be the single, authoritative and comprehensive source of high quality data  To enable linkage of data across all care settings  To ensure the consistent derivation of data items and construction of indicators for analysis  To improve the timeliness of data for analysis purposes  To provide a secure environment which enables patient confidentiality to be maintained according to national standards

6. National (NASP) Contract Replacement of NWCS, including the receipt, validation and transfer of commissioning datasets to support –Commissioning –Payment by results –18-week monitoring Receipt, storage and provision of access to Spine data –Demographics –Prescriptions –“PSIS” Summary Care Record

7.  Release 3L providing “landing” capability for cds v6, plus loads from demographics and Choose and Book referrals – completed  Changes to support Payment by Results in 08/09 – completed  Release 3R providing processing & reporting for 18 weeks and further reporting for CAB and PDS – May/Jun 2008  Release 4 including further 18 week processing, pseudonymisation and cds upgrade – Oct/Nov 2008  Release 5, possibly to include PbR / HRG v4 – March 2009 SUS Releases in 2007 and 2008

8.  NHS Comparator releases (Apr & Sept) - completed  Early reporting of comparative referral to treatment waiting times and elective pathways – completed  Additional comparators and presentation of practice level data, with particular emphasis on support for practice based commissioning resource allocation and budget setting; provider comparators – completed  Data quality dashboard - initial release completed  Extended range of comparators and refresh underlying data, including dispensed prescriptions (Detailed content to be agreed with DH and NHS users) – due Apr 08 SUS Releases in 2007 and 2008

11. 18+ Terabytes of data in SUS > £30 billion of PbR transactions processed 800+ million Activity records submitted to SUS Over 1 million records entering SUS each day Over 100,000 managed service extract reports produced from SUS Over 20,000 user-defined extracts produced Over 4,500 users registered for NHS Comparators Over 1,500 users registered for SUS Currently over 320 organisations submitting data Some Statistics

12. Local Service Providers Functionality to –produce mandatory datasets (e.g. CDS) –enable users to select and extract data from reference solution (all elements of a patient’s record) –manage / store these extracts and combine them (linkage) with other data –enable analysis and reporting of these data, including geographical analysis and presentation –Provide users with access to other specialist analysis tools (e.g. SPSS) Production of standard reports (scheduled and ad hoc)

13. Need to consider the use of business intelligence in a wider secondary uses context: –Reporting through other national bodies Information Centre (HES, NHS Comparators) Healthcare Commission –Research and Development: Databases such as GPRD, Biobank –Public Health Public Health Observatories Cancer Intelligence Centres –Reporting through Local Service Providers –Local Reporting Solutions Reporting is at all levels ….

14. there should be one national approach to secondary uses user access would be managed through the security and confidentiality facilities within NHS CRS information provided through the Secondary Uses Service will normally be pseudonymised data would, where possible, be collected or derived from clinical systems as a by-product of direct care SUS would include the tools and services for an effective and secure working environment for analysis and reporting Which implies ….

15. SUS Information Governance Strategy  Security - including  Physical security, access control, audit, archive  Confidentiality - including  Pseudonymisation regime, dissent, etc  Data Quality  Education & Training - including  Ensuring well trained users understand IG rules  IG Toolkit

16. Last Updated: Tuesday, 20 November 2007, 19:51 GMT Is this important ?

17. Extract Service

18. Aims of the Extract Service To enable wider access to SUS data and hence to encourage greater use of the information To provide the data in a safe and secure manner that protects the confidentiality of individual patients

19. CDS Types Admitted Patient Care (APC) Finished Episodes Out Patients (OP) Accident & Emergency (A&E) Full data sets with pseudonymisation and derivations New specific format CDS developments - as new CDS versions are introduced, changes will be made to the content and format to reflect the changed data items

20. Format/Content Patient - demographics Admissions Discharges Episodes and Spells Clinical Health Resource Groups Organisation Geographical Practitioner Augmented/critical care Maternity

21. Pseudonymisation - 1 Removed fields –Name & address –Record identifiers –Ethnicity Pseudonymised Fields –NHS Number –Local Patient Identifier –Date of Birth –Postcode –Consultant Code –GP Code

22. Pseudonymisation - 2 Derived fields –Age eg start/end of episode, Mother (from d.o.b.) –Year of birth, year and month of birth of Mother –Organisations eg Practice, PCT, SHA (from Postcode) –Duration of stay (from start & end dates) –Areas eg electoral ward, provider location, census output area, country, county, ED District, government office, Local Authority (from postcodes)

23. File Sizes File size estimates – a rolling 3 months national extracts –APC Episodes - 4 million rows by 253 columns 375 megabytes compressed 3 gigabytes uncompressed –Outpatients -16 millions rows by 112 columns 1.2 gigabytes compressed 7.5 gigabytes compressed –A&E - 3 million rows by 85 columns 270 megabytes compressed 2.7 gigabytes uncompressed

24. Out of Scope Future outpatients Mental health Payment by Results Other derivations, such as Mosaic, meteorological data Comparison with HES On-line

25. Delivery Mechanism Via N3 End Point Registration (visit www.n3.nhs.uk for more information)www.n3.nhs.uk Via External Data Transfer (EDT) Client software installation which supports inbound communications

26. Commercial Basis Charges are based on the recovery of costs incurred The contract for SUS is between NHS Connecting for Health and BT The Service Description becomes an agreement between the applicant and the Secretary of State for Health The service levels are as defined in the BT NASP contract NHS Connecting for Health and BT agree specific details of dates and deliveries in consultation with the applicant BT bill NHS Connecting for Health, and NHS Connecting for Health bill the applicant directly

27. If you want to find out more ….. Contact jeremy.thorp@nhs.neteremy.thorp@nhs.net