Communication from the Health and Social Care Information Centre about opt-outs and your care information choices.
Sharing your records: your personal information
Information about you is used in a number of ways by the NHS and social care services to support your personal care and to improve health and social care services for everyone.
The Health and Social Care Information Centre (HSCIC) is the national NHS organisation with a legal responsibility to collect data as people make use of NHS and social care services. The data is used both at a local level and nationally to help with planning, managing your care, supporting research into new treatments, identifying trends and issues and so forth, and is used to try to make services better for all.
You can, however, choose not to have information about you shared or used for any purpose beyond providing your own treatment or care.
Your right to opt out
You can choose not to have anything that could identify you shared beyond your GP practice. You can also choose for the HSCIC not to share information it collects from all health providers any further.
If you have previously told your GP practice that you don't want the HSCIC to share your personal confidential information for purposes other than your own care and treatment, your opt-out will have been implemented by the HSCIC from April 29 2016. It will remain in place unless you change it.
Simply contact your GP either to register an opt-out or end an opt-out you have already registered and they will update your medical record. Your GP practice will also be able to confirm whether or not you have registered an opt-out in the past.
You can find more information about how the HSCIC handles your information and choices and how it manages your opt-out on the HSCIC website www.hscic.gov.uk/yourinfo.
The HSCIC has a statutory role to collect and process health and social care information which is set out in the Health and Social Care Act 2012.
The HSCIC's fair processing materials, available at http://www.hscic.gov.uk/patientconf, explain and provide further information on:
- what HSCIC collects - the types of information the HSCIC collects and what it's used for
- personal information choices - people's rights regarding care information
- information requests from organisations - how organisations can ask HSCIC to collect or provide access to care information
- assurance bodies and processes - how the information requests HSCIC receive are carefully looked at
- examples of benefits that have been realised through the provision of such information including case studies involving breast cancer and diabetes that are available at: http://www.hscic.gov.uk/benefitscasestudies/extracts
The HSCIC is absolutely committed to keeping all of the data it handles safe and secure and applies the same principle to any data that is released outside of the organisation.
Information is only ever shared with organisations that have gone through a strict application process, who can demonstrate they have a legitimate reason to access the data to use it for the benefit of health and care purposes, as per the new protections introduced as part of the Care Act 2014, and who have signed a legally binding agreement. So for example commercial companies cannot receive information for insurance or marketing purposes.
As part of the application process the Data Access Advisory Group, an independent group, hosted by the HSCIC, considers all applications for data that are identifiable or de-identified for limited access.
Should you require any further information that is not already covered within our web pages we can be contacted by email at firstname.lastname@example.org or by phone on 0300 303 5678.