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Care.data

NHS England is commissioning a modern data service from the Health and Social Care Information Centre (HSCIC) on behalf of the entire health and social care system. Known as care.data, this programme will build on existing data services and expand them to provide linked data, that will eventually cover all care settings, both in and outside of hospital.

Under the Health and Social Care Act 2012, NHS England has the power to direct the HSCIC to collect information from all providers of NHS care, including general practices. The specification of the data to be extracted by GP practices were considered by the Joint GP IT Committee of the British Medical Association and the Royal College of General Practitioners, as well as an independent advisory group.

Read more about care.data

The General Practice Extraction Service (GPES) will be used to extract GP data each month. Initially, the data will cover the period from April 2013 onwards. The identifiers to be extracted are: NHS number, date of birth, postcode, and gender which will allow patients' GP data to be linked to their hospital data. No free text will be extracted, only coded information about referrals, NHS prescriptions and other clinical data.

Read the technical specification of the extract

NHS England, HSCIC the BMA and the RCGP have worked together to produce guidance and resources to support the care.data programme. The specific materials are intended to support GP practices in raising patient awareness of the plans to extract coded GP data as part of the care.data programme and to ensure that GP practices know what to do if a patient objects to the use of personal confidential data (PCD) beyond their direct care.

NHS England and the HSCIC are supporting awareness raising at a national level - this includes sending a leaflet about information and data sharing to every household in England, starting in January 2014.

Benefits of sharing information

It is important for the NHS to share information about the health needs of the population and the quality of the treatments they receive.

By sharing information in this way, researchers can identify patterns in disease and the most effective treatments. We can also:

  • Find more effective ways of preventing or managing illnesses
  • Advise local decision makers how best to meet the needs of local communities
  • Promote public health by monitoring risks of disease spread
  • Map out pathways of care to streamline inefficiencies and reduce waiting times
  • Determine how to use NHS resources most fairly and efficiently

IAG recommendations

The GPES IAG discussed a customer requirement for the NHS England's care.data programme at the 14 February 2013 meeting, and recommended that this requirement should proceed to extraction subject to changes. The full text of the IAG's recommendation and the IAG pack documents for this customer requirement can be downloaded via the right-hand menu.

IAG recommendations for the care.data general practice extract (version 2.1)

The GPES IAG discussed an updated customer requirement (version 2.1) for the NHS England's care.data programme at the 27 March 2013 meeting, and made the recommendation by majority vote that this requirement should proceed to extraction. The IAG pack documents for this customer requirement can be downloaded via the right-hand menu.

Addendum

On 12 September 2013 the GPES IAG also considered a request submitted by NHS England for the care.data addendum requirement. The IAG made a recommendation by majority vote of further consideration or significant changes.

In particular the GPES IAG suggested that:

  • Applications to the HSCIC for disclosure of data from the Care Episode Service should be subject to appropriate governance controls, including independent external scrutiny that would consider whether data disclosure would be in the public interest.
  • Details should be published about those governance controls and about the data disclosure decisions made.
  • Additional information should be provided about which types of organisations would be eligible to receive data.
  • The information materials produced should sufficiently describe the intended wider audience for Care Episode Service data.  They should be updated to make patients and the public aware that data could be shared with other organisations outside the NHS.
  • The two Privacy Impact Assessments referred to in the Information Governance Assessment should be completed and published, as should the updated template data sharing agreement for use between the HSCIC and data recipients.

The HSCIC endorsed the GPES IAG recommendation for the NHS England care.data addendum on 3 October 2013.

Details of the IAG's discussions of this requirement can be found in the 14 February 2013, 27 March 2013 and 12 September 2013 meeting minutes, which can be downloaded from the IAG meeting minutes page.

For further information

Further information on NHS England's care.data general practice data extract can be found on their website.

xls icon Care.data GP Data Specification [2Mb]

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