Health and Social Care Information Centre - more information and links

Patient Information Line

The national patient information line went live on 6th January.  The five most common questions have been:

1. Can I change my mind?  (FAQ 12)
2. I can’t get to my practice to object, what should I do? (FAQ 10)
3. How long have I got to decide if I want to object? (FAQ 11)
4. What is the secure environment mentioned in the leaflet? (FAQ 3)
5. Do I have to do anything if I want my information to be used?  (FAQ 17)

If you have any questions, please contact the national patient information line (0300 456 3531) or to the patient FAQs.  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.

Animation

It is important that we communicate with patients in a range of formats.  So today, NHS England is launching an animation to support awareness-raising.   The main aims of the animation are (a) to explain the care.data programme and (b) to remind patients that they have a choice.  Subtitles are available.  

Misconceptions

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,NHS England is 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.  

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

Privacy Impact Assessment

For patients who wish to understand more about how their data is protected, NHS England has 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 they 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.

Summary Care Record

NHS England are that 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