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Detailed Care Record (Data Sharing)

Information in medical records can be used to improve the way health care is delivered. You may have heard of some changes within the health service with regard to the way patient information is utilised, please find details below. 

What’s changing?

The Health and Social Care Information Centre (HSCIC) is working with NHS England to introduce a new data extraction system, called care.data, which will allow sharing of some aspects of patients’ medical records. By linking information from the different places you receive care, the NHS can improve the services offered.  Your postcode or NHS number (not your name) will be used to link your records in a highly secure system, so your identity is protected.

Why are these changes needed?

These changes will improve the way health care is delivered by providing a complete picture of the service.

For example: a group of patients could have the same operation but receive different aftercare. Those planning health services can look at which aftercare worked best so that all future patients can benefit from these experiences.

The changes will deliver an effective system for collecting, analysing and sharing data whilst protecting patients' privacy and confidentiality. The system will also ensure any unacceptable standards of care are identified, and therefore rectified, as soon as possible.

Are my personal details safe?

Only the minimum amount of information will be used and strict law and confidentiality rules will be followed. Please be assured that this process is completely automated and that no data will be sold or released to pharmaceutical or private companies.

How exactly does the process work?

Information will be sent from your GP practice to the The Health and Social Care Information Centre (HSCIC).  The highly secure system will link information from  your GP record to your hospital record, if you have one, to create a new linked record.  Only the minimum a mount of identifiable information will be used in the linking process: your date of birth, full postcode, NHS number and gender (rather than your name).  

The process to create the linked record will be an automated one.   Your identifiable infomration will be deleted and a new record will be created, that does not contain any information which identifies you.

Will any research be carried out on data that does identify me?

Most researchers carry-out studies using information that does not identify you. However there are limited circumstances, where the law allows the HSCIC to pass on information which may identify you where there is special approval. Please visit the Health & Social Care Information Centre website  for further information.

Do I have a choice?

If you are happy for your information to be shared then you do not need to do anything. However you can choose to opt out of this process by writing to your GP who will record this on your medical records thus preventing your information being shared.

You can opt out at two different levels:

1.  Preventing your information from leaving your GP practice;

2.  Preventing your data from leaving the HSCIC.

Please note there are some circumstances where the law does require doctors to provide some very limited information about certain things. 

Download the Opt-out Form

I’d like more details

For further information, please refer to the ‘how information about you’ leaflet  Click here or visit the Health & Social Care Information Centre website at http://www.hscic.gov.uk/ .  



 
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