A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

Current data matters: care.data

NHS England closes the care.data programme (6th July 2016)

In light of the Review of the National Data Guardian, published on 6th July, NHS England has taken the decision to close the care.data programme.

The government has said that it is "absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients", and that the work will now be taken forward by the National Information Board, in close collaboration with the primary care community, "in order to retain public confidence and to drive better care for patients".

 

Remaining parts of this page describe some of the history, and have been extracted directly from several official sources.

[Source: NHS Choices]

The care.data programme - collecting information for the health of the nation

The care.data programme will bring together securely, health and social care information from different settings in order to see what’s working really well in the NHS and what could be done better. Using data in this way is known as data sharing for purposes beyond direct care, and the information will only be shared if it will benefit patient care.

Collecting and connecting information nationally will help the NHS to:

  • better understand diseases, and develop drugs and treatments that can change lives
  • understand patterns and trends in public health and disease to ensure better quality care is available to everyone
  • plan services that make the best of limited NHS budgets for the health and wellbeing of everyone
  • monitor the safety of drugs and treatments
  • compare the quality of care provided in different areas of the country

GP practices in four parts of the country are helping to develop the care.data programme: Blackburn with Darwen, Somerset, West Hampshire and Leeds.

[Source: NHS Choices]

 

The rights of a patient to opt out of this process

The Health and Social Care Information Centre (HSCIC) ‘guide to confidentiality in health and social care’ states that “any patient may object to confidential information about them being sent from a GP practice being shared onwards by the HSCIC.”

If patients “do not want information about them leaving a GP practice in identifiable form for purposes other than direct care, then confidential information about them will not be shared” - this is referred to as a type 1 objection.

If patients “do not want information about them leaving the HSCIC in identifiable form, then confidential information about them will not be sent to anyone by the HSCIC”. This is referred to as a type 2 objection.

In April 2016 the Secretary of State issued an instruction to the HSCIC about how to process the Type 2 objections, available here.

In May 2016 the HSCIC published 'Care Information Choices', the latest figures for these opt outs (available here). The accompanying statement from HSCIC highlighted the current numbers of opt outs, shown below:

 

[Source: Health and Social Care Information Centre (HSCIC)]

As of May 2016:

2.2 per cent of patients in England (around 1 in 45) have opted out of information that identifies them being shared outside of the HSCIC for purposes beyond direct care (a type 2 opt-out).

There are 1,461,877 instances of type 1 opt-out codes occurring within GP records, preventing these records from being shared outside the practice for purposes other than direct care

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

[Source: Care Information Choices, May 2016]

[Source: HSCIC news release available here]