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.
The proposed national roll-out of the care.data programme has been extended until Autumn 2014 to raise awareness, listen and act on the views of the public, patients and key stakeholders and to allow further discussion on the risks and benefits involved.
As a first step we will be working with a number of GP practices (between 100 - 500). These Pathfinder GP practices will test, evaluate and refine all aspects of the data collection process ahead of national roll-out. The data that we collect from the GP practices will be linked to data that we already collect from hospitals to give a more rounded picture of care and treatment. Find out what we will collect from GP records and how the information will be used and shared.
The General Practice Extraction Service (GPES) will be used to extract GP data each month. 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.
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
The GPES Independent Advisory Group (IAG) have considered the following customer requirements for the care.data programme:
- care.data version 1.0, discussed on 14 February 2013. This was recommended to proceed subject to changes.
- care.data version 2.1, discussed on 27 March 2013. This was recommended to proceed to extraction.
- care.data addendum, discussed on 12 September 2013. The IAG made a recommendation of further consideration or significant changes.
- care.data updated addendum, discussed on 11 September 2014. This was recommended to proceed subject to changes and/or further approvals.
Further details about these recommendations can be found below.
Details of the IAG's discussions about these requirements 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. The 11 September 2014 meeting minutes will be made available following approval by the GPES IAG.
The GPES IAG discussed the care.data customer requirement version 1.0 at the 14 February 2013 meeting, and made the recommendation by majority vote 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.
The GPES IAG discussed an updated customer requirement (version 2.1) for the 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.
On 12 September 2013 the GPES IAG 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 care.data addendum on 3 October 2013.
The GPES IAG considered the care.data updated addendum on 11 September 2014 and made the recommendation by majority vote for this requirement to proceed subject to changes and/or further approvals.
The following changes were recommended:
- The current lack of clarity about the data disclosure controls that will be in place following the care.data pathfinder stage was a significant cause of concern, and more information would be welcomed about commitments beyond the pathfinder stage. Only data from the pathfinder practices should be made available for the additional two purposes set out in the updated addendum. Expansion to purposes beyond commissioning should receive further consideration at the end of the pathfinder stage.
- As part of their advice on whether data extraction from pathfinder practices is ready to commence, the Independent Information Governance Oversight Panel should be asked to consider whether they are satisfied that the pathfinder communications and fair processing activities have resulted in satisfactory understanding within the pathfinder practice populations.
- The HSCIC and NHS England should ensure that all the IAG's recommendations for the previous care.data addendum made on 12 September 2013 are met in full.
- Clearer definitions of 'research' and 'health intelligence' should be proposed by the care.data programme.
- The IAG also suggested independent evaluation of how far the data collected has met the examples given of benefits envisaged.
No further approvals were thought to be required.
For further information
Further information on NHS England's care.data general practice data extract can be found on their website.
IAG documents: care.data version 1.0 (February 2013)
- IAG Recommendation [21kb]
- IAG submission template - care.data version 1.0 [57kb]
- Customer requirement summary - care.data version 1.0 [1Mb]
- Benefits plan - care.data version 1.0 [534kb]
- Information governance assessment - care.data version 1.0 [133kb]
IAG documents: care.data version 2.1 (March 2013)
- IAG submission template - care.data version 2.1 [152kb]
- Customer requirement summary - care.data version 2.1 [1Mb]
- Benefits plan - care.data version 2.1 [549kb]
- Information governance assessment - care.data version 2.1 [136kb]
IAG documents: care.data addendum (September 2013)
- IAG submission template - care.data addendum [63kb]
- Customer requirement summary addendum - care.data addendum [605kb]
- Benefits plan - care.data addendum [306kb]
- Information governance assessment - care.data addendum (see note) [217kb]
Note: HSCIC and NHS England are clear that the use of care.data for insurance purposes - including but not limited to the calculation of premiums - is, and will remain, strictly prohibited. Information gathered by the care.data programme will only be released if it is being employed to benefit the health and social care system.