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New figures released on data sharing opt-outs

17 May 2016: New figures published today show counts of opt-outs registered in general practice that prevent patients' data held on their GP record being shared outside a GP practice for purposes other than direct care (known as type 1 opt-outs).

The statistics also show the number of patients at each GP practice who have opted out of their data being shared by the Health and Social Care Information Centre (HSCIC) for purposes beyond their direct care (known as type 2 opt-outs).

Care Information Choices, May 2016, is based on data from GP practices in England as at May 2016.

Type 1 and type 2 opts-outs are presented at GP practice level. Type 1 counts are based on the number of times the opt-out code occurs within GP records, which will include instances where the opt-out is recorded for the same patient more than once, such as where the opt-out is recorded at more than one practice.

As this information is collected as counts only, there is no way to de-duplicate this information and levels of type 1 opt-outs are likely to be higher than the number of individual patients with a type 1 opt-out.

However, levels of type 2 opt-outs are reported as total patients, as it is possible to de-duplicate these records.

The full report, which is classed as experimental4 can be viewed at http://www.hscic.gov.uk/pubs/careinfochoicesmay16


Notes to editors

1. The Health and Social Care Information Centre (HSCIC) was established on April 1 2013 as an Executive Non Departmental Public Body. It is England's trusted data source, delivering high quality information and IT systems to drive better patient services, care and outcomes. Its work includes publishing more than 260 statistical publications annually; providing a range of specialist data services; managing informatics projects and programmes and developing and assuring national systems against appropriate contractual, clinical safety and information standards.

2. A Type 2 opt-out is intended to prevent any identifiable information leaving HSCIC for purposes beyond direct care. The HSCIC will not apply the opt-out in any situation where it could affect a patient's direct care - for instance for screening. The opt-outs will be applied where data is released to support non-direct care, such as research into cancer treatments.

3. Since early 2014 patients have been able to register two types of opt-out with their GP practice in order to express preferences about the way their personal confidential information should be used for purposes beyond their direct care. These have been more commonly known as 'type 1' and 'type 2' opt-outs.

4. "Experimental statistics" are new official statistics that are undergoing evaluation. A key part of the "experimental statistics" label is user engagement in the evaluation of those statistics. The HSCIC invites readers to comment on this publication, which will help inform the next report. Comments may be sent to enquiries@hscic.gov.uk.

5. For further information about how information is safeguarded and securely shared for health purposes please visit: http://www.hscic.gov.uk/patientconf

6. For media enquires please contact media@hscic.gov.uk or telephone 0300 30 33 888.

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