How information about you can help the Health and Social Care Information Centre (HSCIC)
to provide better care across the NHS.
Confidential information from your medical records can be used by the NHS to improve services offered so we can provide the best possible care for everyone.
This information along with your postcode, and NHS number, but not your name, are sent to a secure system where it can be linked with other health information.
This allows those planning NHS services or carrying out medical research to use information from different parts of the NHS in a way which does not identify you.
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 for the public to understand, we are referring to the different types as: red (personal confidential data), amber (pseudonymised) and green (aggregated or anonymised) data. Each “colour" of data is protected by a different suite of privacy safeguards. For an explanation, see this blog by the Chief Data Officer.
Privacy Impact Assessment
For patients who wish to understand more about how we protect their data, we have published a privacy impact assessment for the care.data programme. This document provides details about the privacy implications of the programme (both negative and positive) and explains how we are mitigating each risk. In addition, the HSCIC has published a privacy impact assessment for all the personal data it processes, which includes the data extracted for care.data.
Differences between this and the summary care record
The Summary Care Record is only accessible with your consent by healthcare professionals who are providing you with direct medical care, (and only if you did not opt out of having one). This may be for example in a hospital A&E, or a GP practice where you are not registered e.g. if you needed to see a GP urgently while on holiday. This does therefore include your name, date of birth, home address etc and any allergies and medication you are on. For details, see FAQ 14 .
Care.data will be used for purposes beyond direct care; however the data will not be made available for the purposes of selling or administering any kind of insurance; it will not be shared or used for marketing purposes; and, NHS England and the HSCIC will not profit from providing data to outside organisations.
You have a choice. If you are happy for your information to be used in this way you do not have to do anything.
If you have any concerns or wish to clarify what is happening you can either:
- Ring the national patient information line on 0300 456 3531.
- Other 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.
- click on the FAQ link below to see the most common questions being asked
- ask reception for a copy of the leaflet "How information about you helps us to provide better care".
- see the website www.nhs.uk/caredata; and there are frequently asked questions (FAQs) available.
- There is also a short animation which briefly explains the care.data programme and the choice you can make. Watch it here.
If you want to opt out there is a form you can complete on the website www.medconfidential.org/how-to-opt-out and we will then add the codes to your medical record which will prevent the information being collected and sent; or just send us an e-mail to firstname.lastname@example.org.