NHS England has announced an extension to the proposed roll out of the care.data programme, which aims to help the NHS to get a complete picture of what is happening across health and social care and to plan services according to what works best.
What is care.data?
Care.data is a new data programme to link health data from all settings, GP, hospital and community, along with social care data, to inform healthcare commissioning and improvement.
Data within the care.data programme is not collected to support the direct care clinicians provide, but instead, the overall running of the NHS.
As a patient, you may receive care and treatment from a number of places such as your GP practice, hospitals and community services, and to find out how effectively this work, care.data will link data from all these settings. By bringing this information together from all the different places, we can compare the care provided in one area with the care provided in another, so we can see what works best.
Care.data will use information such as your postcode and NHS number to link your records from these different places. Records are linked in a secure NHS environment nationally so
your identity is protected. Information within the scheme will be made available to others, such as those planning NHS services and approved researchers, normally, but not exclusively in non-identifiable form.
Extending the care.data programme
In recent months, GPs, professional bodies and patient groups have told NHS England that they need to explain better how the care.data programme will use patient data. In particular, NHS England should be clearer on patients’ right to object, protecting privacy, how much work GPs will have to do, and how access and use to the data held by the Health and Social Care Information Centre (HSCIC) will be controlled.
This is why NHS England announced an extension to the proposed roll out of the care.data programme until the autumn. This will give them time to raise awareness, listen and act on the views of patients and everyone else involved, and to discuss both the benefits and risks involved. More discussion, debate, reassurance and action is needed to make sure the public are aware of their choices and can decide how they want their data to be used.
Later this year, in a pilot form in selected areas, care.data will start to extract data about patients from GP records and begin creating the database by adding this to existing hospital records. A useful presentation from NHS England regional office in London can be seen here and gives you information on when the programme will continue, and what changes have already been made.
To find out more about Care.data visit the NHS England website NHS England website.