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 the existing data services such as the Hospital Episodes Statistics (HES) service, which was launched in 1989, and expand it 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. Details are available here:
www.england.nhs.uk/caredata
Download this HSCIC Patient Leaflet for more information
What kinds of information sharing can you object to? There are two types of information sharing you can object to:
Every household in England is receiving the leaflet ‘Better Information means better care’ during January. The leaflet raises awareness amongst patients about how their information is used for purposes beyond their direct care, including for the care.data programme. There are a number of resources that provide additional information:
The five most common questions have been:
Download the Patient FAQs for more information. Further information is available from the National Patient Information Line (0300 456 3531). Accessible formats including Braille, audio and large print are available from the patient information line. In addition, large print and audio formats are available from the patient website.
There are a number of public misconceptions about how data will be used. These are mostly due to a confusion around the different types of data that will be released by the Health and Social Care Information Centre (HSCIC).
To make it easier the different types of data will be referred to as:
Each “colour” of data is protected by a different suite of privacy safeguards. For an explanation, see this blog by the Chief Data Officer.
For the avoidance of doubt:
For patients who wish to understand more about how their data is protected, a Privacy Impact Assessment has been published for the care.data programme. This document provides details about the privacy implications of the programme (both negative and positive) and explains how each risk is being mitigated. In addition, the HSCIC has published a Privacy Impact Assessment 2013 for all the personal data it processes, which includes the data extracted for care.data.
There continues to be some confusion about the differences between the Summary Care Record and the use of data for purposes beyond direct care. For details, see FAQ 14 and the final section of this guidance.
For further clarification please contact:
HSCIC Contact Centre on 0845 300 6016 (open from 9 am to 5 pm Monday to Friday) or send an email to:[email protected]
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