What is Care.Data?

Using information about the care you have received enables those involved in providing care and health services to improve the quality of care and health services for all. The role of the Health and Social Care Information Centre (HSCIC) is to ensure that high quality information is used appropriately to improve patient care. NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address gaps in information.

Under the Health and Social Care Act 2012, there are important changes which will allow the Health and Social Care Information Centre (HSCIC) to collect and share confidential information from medical records.

The leaflet Better information means better care (PDF, 2MB) explains in detail how HSCIC proposes to use information from your health record for health care planning, research and quality assurance purposes. Significant conditions, medication, lifestyle information and test results will be extracted from your record and, once anonymised, used for these purposes by HSCIC. This information may also be made available by HSCIC to other interested parties e.g research institutions and pharmaceutical companies. Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked, a new record will be created. This new record will not contain information that identifies you.

Although there are many safeguards built into HSCIC’s system, there are concerns in some quarters that your privacy may be compromised by organisations which can, in some circumstances, unlock the code anonymising your information. There are also concerns that information about you can be sold to researchers, drug companies and insurance companies, without your knowledge or consent and without your anonymity being fully protected.

Information from your health record will automatically be extracted by HSCIC unless you OPT OUT.

If you wish to opt out, please sign the opt out form below or attached and give it to a member of staff. You can also email the form to [email protected]. They will make a note of this in your medical record. This will prevent your information being used other than where necessary by law, such as in case of a public health emergency. You can ask us to notify HSCIC that they must not extract any of the data from your GP record.

You cannot prevent HSCIC from extracting data about you from hospitals or other social care settings. However, you can ask us to notify HSCIC that they should not share any of your data with researchers or other third parties. For maximum privacy, you will need to request both options.

Any decision you make to opt out will not affect the care you receive. You can change your mind at any time and as many times as you wish. Just inform the GP practice and ask them to record your wishes. Information from GP practices will begin to be extracted and sent to the HSCIC from October 2014.

Care.Data Opt Out Form

For maximum prviacy you need to opt out of both options.