Patient Datalogo

Using Your Data – Health and Social Care Information

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:

  • You can object to information containing data that identifies you from leaving your GP practice
  • You can also object to any information containing data that identifies you from leaving the HSCIC secure environment. This includes information from all places you receive NHS care, such as hospitals.

Care.Data

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:

  • NHS Choices Website
  • Patient Information Line – (0300 456 3531) The national patient information line went live on 6th January 2014.

The five most common questions have been:

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

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 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.

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:enquiries@hscic.gov.uk