Better Information means Better Care
Information about you and the care you receive is shared, in a secure system, by healthcare staff to support your treatment and care. It is important that we, the NHS, can use this information to plan and improve services for all patients. We would like to link information from all the different places where you receive care, such as your GP, hospital and community service, to help us provide a full picture. This will allow us to compare the care you received in one area against the care you received in another, so we can see what has worked best. Information such as your postcode and NHS number, but not your name, will be used to link your records in a secure system, so your identity is protected. Information which does not reveal your identity can then be used by others, such as researchers and those planning health services, to make sure we provide the best care possible for everyone. How your information is used and shared is controlled by law and strict rules are in place to protect your privacy. We need to make sure that you know this is happening and the choices you have.
Please take time to read this HSCIC-Patient-leaflet. You need to make a choice.
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.
Patient Information Line (The national patient information line went live on 6th January.)
The five most common questions have been:
Can I change my mind? (FAQs 12)
I can’t get to my practice to object, what should I do? (FAQs 10)
How long have I got to decide if I want to object? (FAQs 11)
What is the secure environment mentioned in the leaflet? (FAQs 3)
Do I have to do anything if I want my information to be used? (FAQs 17)
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:
red (personal confidential data)
amber (pseudonymised data)
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.
For the avoidance of doubt:
Data will not be made available for the purposes of selling or administering any kind of insurance
Data will not be shared or used for marketing purposes (FAQ 23)
NHS England and the HSCIC will not profit from providing data to outside organisations (and certainly not your GP!)
Privacy Impact Assessment
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.
Summary Care Record
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.