How to opt-out of care.data (and all other secondary uses of your information)


This non-commercial website was written by Dr Neil Bhatia, a GP and Caldicott Guardian / Information Governance lead in Hampshire.

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The care.data project has now been shut down by the Department of Health.

You can find out about all of the NHS Databases, secondary uses projects, and other NHS data sharing schemes, via www.nhsdatasharing.info

care.data will be back, in one form or another, so this site will remain available (though no longer updated) for reference purposes.


This web site tells you how to opt-out of care.data (and all other secondary uses of your information)

It tells you about Type 1 ("9Nu0") and Type 2 ("9Nu4") opt-outs (or objections) - electronic flags added to your GP record, at your request, that prohibit the use of your personal confidential information in various ways.

You can find out about care.data at www.caredata.website

If you want to opt-out of care.data and secondary uses only, then follow the instructions below.

If you want to opt-out of all of the NHS Databases, then download this single form and use it instead.

You can find out about all of the NHS Databases, and other NHS data sharing schemes, via www.nhsdatasharing.info


First, download an opt-form:

There is no "official" or mandatory opt-out form that you are obliged to use, whether produced by the HSCIC or anyone else.

It doesn't matter which form you use.

Make sure that you haven't been given, or downloaded, a Summary Care Record opt-out form by mistake.

Fill the form in, and either :

That's it. Simple.

The two opt-codes (9Nu0 and 9Nu4) will be added to your GP record by your surgery.

Remember to opt-out your children, or those for whom you have parental responsibility, as well.
Your children's medical records will be uploaded too unless you opt them out.


Please:

just to opt-out.

You do not need to.



With both the 9Nu0 and the 9Nu4 opt-outs in force:

You will still be invited to cervical screening, breast screening, bowel cancer screening, diabetic retinopathy screening, abdominal aortic aneurysm screening, and any other current or future national screening programmes, if you are eligible - the 9Nu0 and the 9Nu4 opt-outs do not prevent these programmes in any way.


The secondary uses (9Nu0) opt-out will ensure that no identifiable information about you will be extracted or uploaded - to anyone, not just the HSCIC- without your express consent, for secondary uses, both now and in the future.

That includes care.data, risk stratification, the national audits and identifiable GPES extractions - all purposes that are unrelated to the provision of your direct medical care.

In addition, the 9Nu0 opt-out will also prohibit de-identified information about you concerning any eMed3 Statement of Fitness to Work reports (i.e. sick notes) being uploaded to the HSCIC and subsequently passed to the Department of Work and Pensions.

Be reassured - opting out of care.data and all other secondary uses will in no way affect how healthcare professionals provide you with direct medical care.
care.data and other secondary uses are not about information sharing between healthcare professionals.

The 9Nu0 secondary uses opt-out is a very useful flag to request your GP to add to your surgery record. For many of the secondary uses schemes:

You will lose control of your information once extracted and uploaded - unless you opt-out.

You can find out more about secondary uses, the effects of the 9Nu0 opt-out, the NHS Databases, and NHS data sharing in general, at www.nhsdatasharing.info



The 9Nu0 code has an immediate effect in preventing confidential information from your GP record from being uploaded to the HSCIC or used for secondary purposes.

The 9Nu4 code will prevent the HSCIC from releasing or sell any information that it holds, and that clearly identifies you.



Feel free to send me constructive comments about this site.

Neil.Bhatia@nhs.net

PGP public key: 9651 BDC9 46B5 7768 3B3F AF79 8FE1 DACC FEFA 344F

I will read every comment sent, though please do not be offended if I do not reply to your message.

Privacy policy: I will not sell, trade or otherwise transfer to any third parties your personally identifiable information (your email address or the content of your email)


This non-commercial website was written by Dr Neil Bhatia, a GP and Information Governance lead in Hampshire.

Detailed information about care.data can be found at care-data.info

Last updated: 22.04.16


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