care.data


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

Follow @docneilb


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care.data will be back, in one form or another, so this site will remain available (though no longer updated) for reference purposes.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

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.

If you are really interested then much more detailed information about care.data, including links and references, can be found at care-data.info

If you just want to know how to opt-out, then look at: optout.care-data.info

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


When it come to how your GP-held medical information is used:


Primary uses are uses of data for the main purpose for which they were originally collected directly from the individuals concerned.

For your GP record, this means making that information available, to healthcare professionals that you are seeing, for your direct medical care.

You can download a simple factsheet about data sharing between healthcare professionals here.

You have the right to opt-out of allowing your medical record to be shared, or be directly accessible, for primary purposes - for your direct medical care - beyond your GP surgery, if you so wish.

This may limit the opportunity for certain health professionals (other than those within your GP surgery) to directly access aspects of your electronic GP record in a particular way.

However, it in no way limits all of the other and many ways that your medical information can be made available to those who require it.

That information can, is, and always will be made available to those who require it by your GP, whether directly, by phone, fax, text, letter, email, e-referral or e-prescription.

That information can be made available by you - the patient - directly, by temporarily giving the health professional secure online access to your medical record, or by many of the other ways in which you can share information with health professionals outside of the surgery.

An example of preventing a primary use of your GP record would be opting out of the Summary Care Record.

You can opt back in to primary uses of your GP record at any time in the future.

You can opt back in and allow all the primary use schemes to extract and upload, or stream your data, or you can opt back into each scheme individually, as you prefer.


Secondary uses are uses of existing data for purposes other than those for which they were originally obtained.

For your GP record, this means making that information available, to anyone (not just within the NHS), for purposes other than providing your direct medical care.

Examples of secondary uses include, research, audit, healthcare planning, "population health management", commercial and even political uses.

You can download a simple factsheet about the Type 1 secondary uses opt-out here.

You can download a simple factsheet about the Type 2 secondary uses opt-out here.


If you want to express a Type 1 and/or a Type 2 objection, then do so now.

The Government is currently consulting on consent and opt-outs, and it is highly likely that the right to express a Type 1 opt-#out (at least, as it applies to the extraction and uploading of information from your medical record to the HSCIC) will be withdrawn from a certain date.

If you haven't opted out by that date then you may not be able to do so anymore.


You have the right to opt-out of allowing your medical information to be used for secondary purposes - in ways unrelated to your direct medical care - if you so wish.

You can register a Type 1 objection ("9Nu0") with your GP surgery, which will act on your GP-held medical records, and/or you can register a Type 2 objection ("9Nu4") with your GP surgery, which will act on information that the HSCIC holds about you (whether derived from your GP record or hospital information).

You can find out more about these opt-outs on the HSCIC website.

Not allowing secondary uses of your GP record - which should prohibit risk stratification, the national audits and GPES extractions - will in no way affect the medical care that you receive, anywhere in the NHS or privately.

Opting out of secondary uses of your GP record will not prevent medical researchers accessing your information - they just have to ask for your explicit permission first.

An example of prohibiting a secondary use of your GP record would be opting out of one or more of the national audits.

You can opt back in to secondary uses of your GP record at any time in the future.

You can opt back in and allow all the secondary use schemes to extract, upload and process your data, or you can opt back into each scheme individually, as you prefer.

care.data is an example of a secondary use of your GP medical record.

There are no primary uses of the uploaded information in care.data



This website aims to provide straightforward information to everyone about care.data so that you can make an informed decision about opting out or not.

After reading this site you'll be in a much better position to make that decision.

It's for you to decide whether to opt-out or not. This site will tell you what will be happening to your medical information and what control you have, if any, over the data flows to and from the HSCIC databases.

If you are happy with what is happening to your uploaded medical information - and what might happen to it in the future - then you may choose not to opt-out and so allow your data to be extracted.

But if you are not happy, or unsure, and do decide to opt-out, then this site will tell you how to do so and the opt-out options that you have.


There is no consent with care.data - the decision has been made for you, and for your GP surgery, by the HSCIC.

All you have is the right to object - the right to opt-out - and reverse the decision affecting your medical information.

And you have to act fast, because GP practices in a number of areas will be uploading data very, very soon.

Once your data is uploaded you can never get it removed from the HSCIC databases.


There is no "right to be forgotten" with the HSCIC and your data.


What's happening?

care.data is going to begin soon, and it will affect every man, woman and child in England and their confidential medical records.

care.data is not about sharing your medical information with doctors, nurses and other health professionals outside of your GP surgery.
Its not about enabling the sharing of patient medical records between hospitals and GP surgeries.
It's not about the ways in which your GP shares information about you as part of providing essential medical care.
It's not about ensuring that hospital specialists have the information that they need when you are referred to see them.
It's not about creating a single electronic record that can be viewed by healthcare professionals in any clinical setting.
And it's not about submitting information so that GP surgeries and hospitals are paid appropriately for the care that they provide.

It is about data extraction, linkage and analysis: in other words, data mining.

GP practices nationwide will soon be required to supply patients' personal and confidential medical information, on a regular and continuous basis, to the Health and Social Care Information Centre (HSCIC).

Under the Health and Social Care Act 2012, GP practices have no choice but to allow the HSCIC to extract this information.

The Act removes any requirement to seek the consent of either patients or GPs before extracting and uploading the data.

This project, called care.data, is administered by the HSCIC using software and services provided by a private sector company called ATOS.

It is now thought that care.data extractions from GP surgeries will start in 2016 (it has been delayed three times already).

Initially, care.data will start with pilot practices, so called pathfinders. Certain GP surgeries who are part of NHS Somerset CCG, NHS West Hampshire CCG, the three Leeds CCGs and NHS Blackburn with Darwen CCG, will be the first to upload,

If your GP surgery is a member of either of those CCGs, and you wish to opt-out of care.data, then you need to act fast as uploads could begin at any time.


A list of GP surgeries that will be pilot practices in Somerset CCG can be found here.

Pathfinder practices within this CCG are already uploading or sharing data from GP records in a number of ways, even before care.data has begun.

If your surgery is one of those listed, make sure your GP explains the differences between care.data, the Summary Care Record, risk stratification, and all the other secondary uses of your medical data.

It's your information - don't lose control of it.


A list of GP surgeries that will be pilot practices in West Hampshire can be found here.

Pathfinder practices within this CCG are already uploading or sharing data from GP records in a number of ways, even before care.data has begun.

If your surgery is one of those listed, make sure your GP explains the differences between care.data, the Summary Care Record, the Hampshire Health Record, risk stratification, and all the other secondary uses of your medical data.

Almost all of the pathfinder surgeries in West Hampshire CCG are uploading GP data to the Hampshire Health Record.

It's your information - don't lose control of it.


A list of GP surgeries that will be pilot practices in Blackburn with Darwen CCG can be found here.

Pathfinder practices within this CCG are already uploading or sharing data from GP records in a number of ways, even before care.data has begun.

If your surgery is one of those listed, make sure your GP explains the differences between care.data, the Summary Care Record, risk stratification, and all the other secondary uses of your medical data.

It's your information - don't lose control of it.


A list of GP surgeries that will be pilot practices in the Leeds CCGs can be found here.

Pathfinder practices within this CCG are already uploading or sharing data from GP records in a number of ways, even before care.data has begun.

If your surgery is one of those listed, make sure your GP explains the differences between care.data, the Summary Care Record, the Leeds Care Record, risk stratification, and all the other secondary uses of your medical data.

All 12 pathfinder surgeries in Leeds CCG are sharing GP records via the Leeds Care Record.

A list all of the 104 GP surgeries sharing GP records via the LCR can be found here.

It's your information - don't lose control of it.



The HSCIC will administer the information extracted and uploaded for care.data, and will use it for purposes other than for providing your direct medical care.

This is known as secondary uses of your medical records.

Medical staff treating you in GP surgeries, hospitals, A&E, pharmacies, NHS 111 call centres and GP out-of-hours centres will not use, or be able to use, this database.

care.data is not about information sharing between healthcare professionals.


A bit about data

care.data is not anonymous.

The identifiable information uploaded from your GP records is known as the Primary Care Dataset.

Once uploaded, information released about you by the HSCIC can be divided into four main formats:

Aggregate data is de-identified completely, is not published at patient level, and so cannot be traced back to an individual. Aggregate data is often expressed as numbers or percentages - summary statistics. An example of aggregate data is the information uploaded by GP surgeries as part of the Quality and Outcomes Framework.

Anonymised data has identifiers such as date of birth and NHS number removed, some indicators such as postcode truncated, but is expressed as individual patient records. However, it is potentially identifiable, because it is not aggregated, and the risk of re-identification rises as the data fields published are higher in number, richer in content, and the numbers of patients being referred to diminishes (for example, data about rare conditions).

Pseudonymised data is potentially identifiable. Pseudonymisation is a procedure by which the most identifying fields within a data record are replaced by one or more artificial identifiers, or pseudonyms. The pseudonyms render the data record less identifying whilst allowing tracking back of the data to its origins. There is a genuine risk that pseudonymised data could identify you, especially if that data is provided to organisations that already hold other data about you and can link the pseudonymised data to it. And especially if the pseudonymised data contains very large amounts of information, or very detailed and rich information - just like care.data does. It can be very easy to identify you from pseudonymised data, especially where more than one identifier is still present: such as where your name and address have been removed or pseudonymised, but your postcode and date of birth remain, and remain linkable to, for example, credit reference data.

Clearly identifiable data is as its name suggests - clearly identifiable. The identifiers with the data mean that it is obvious that the data refers to you. This data is also known as personal confidential data, or PCD. An example of this would be your GP record as held by your surgery.

So:


What information will be extracted from my medical records?

The data extracted - your Primary Care Dataset - will include the following:

In due course, the following information is planned to be uploaded:

And, ultimately, your entire GP medical record will be uploaded to the HSCIC.

You will not be asked before your information is uploaded.

This information is clearly identifiable - the NHS number alone uniquely identifies you. It is not anonymised.

You cannot modify in any way, the Primary Care Dataset extracted from your GP records and uploaded to care.data .
You cannot limit the information uploaded about you, e.g. not include certain diagnoses, or your smoking/alcohol habits, or certain medications.
You cannot "anonymise" the upload by removing the fields that identify you.

It's the full, clearly identifiable data upload - or nothing.

This extracted data will be combined with, or linked to, data extracted from any information about you held by hospitals, such as A&E attendances, operations or out-patient appointments, and which has already been uploaded to the HSCIC.
The identifiable hospital data is known as Hospital Episodes Statistics (HES).

In addition, data from other settings where you may have received NHS care will, in due course, be added to your HES record:

This combined database will be known as Care Episodes Statistics (CES) and data from this can be released to organisations in aggregated formats, anonymised formats, pseudonymised formats and clearly identifiable formats.

So CES = GP data + HES data .

Your GP data will continue to be uploaded, initially on a monthly basis, and added to the CES, effectively updating it. So any new diagnoses, medication prescriptions and results will be automatically uploaded and added to your record held by the HSCIC.

Once your data has been extracted and uploaded, the GP practice is no longer the data controller for that information, and cannot control or protect in any way how that information is released or sold, or who has access to it.


Your data disseminated - and sold

Your information is made available to organisations both within the NHS, such as NHS commissioning bodies (e.g. CCGs), but also outside of the NHS, such as:

The HSCIC charges money in exchange for providing data that it holds, especially if it contains personal confidential data - it sells your information (the price list is here).

The HSCIC, and its predecessor the NHSIC, have been selling our HES data for years and years, to hundreds and hundreds of organisations.


The data that the HSCIC releases or sells may be obtained:


You cannot prevent, or control in any way, the release or sale of aggregate data about you from the HSCIC.

You cannot prevent, or control in any way, the release or sale of anonymised data about you from the HSCIC, even though such data could possibly identify you.

You cannot prevent, or control in any way, the release or sale of pseudonymised data about you that the HSCIC already holds, even though such data could quite easily identify you.
Nor can you insist that it must not be released or sold to organisations that may hold other information about you.

You can ensure that any future data that the HSCIC receives about you, from whatever source, is anonymised upon receipt. This will prevent its release in a pseudonymised format.
See care-data.info for details of how to do this.

Because the HSCIC classifies aggregate, anonymised and pseudonymised data as de-identified, it no longer counts as personal data and so falls outside of the Data Protection Act.

That means the HSCIC can give or sell any aggregate, anonymised and pseudonymised data about you, when it likes, to anyone it chooses, in any country, for any purpose, and for whatever price.

You can, however, opt-out using the 9Nu0 code - this will ensure that no data whatsoever is uploaded to the HSCIC from your GP record, and so no data from your GP record can then be released or sold as aggregate, anonymised or pseudonymised data.
The HSCIC can only then release or sell aggregate, anonymised or pseudonymised data obtained from your HES record, or publish it on its website as open data.


You cannot control when, to whom, at what price, or for what purpose, the HSCIC releases or sells clearly identifiable data information about you.

You can, however, opt-out using the 9Nu0 code - this will ensure that no data whatsoever is uploaded to the HSCIC from your GP record, and so no data from your GP record can then be released or sold as clearly identifiable data.
The HSCIC can only then release or sell clearly identifiable data obtained from your HES record.

You can, in addition, opt-out using the 9Nu4 code - this will ensure that no clearly identifiable data whatsoever is released or sold by HSCIC, from any information that it holds about you.
The HSCIC cannot then release or sell clearly identifiable data obtained from either your GP or your HES record.


Clearly identifiable data extracted from your uploaded GP data, your HES record or your combined CES record, is the only type of data released or sold by the HSCIC that must be processed fairly and in line with all of the principles of the Data Protection Act.


Any organisation can apply to the HSCIC to buy your care.data, in any format (although their application may not be successful of course).

Government departments, university researchers, pharmaceutical companies, insurance companies, fast food/soft drink//alcohol/tobacco companies, companies that aim to privatise areas of the NHS, companies or charities that you might have ethical concerns about (such as those that provide abortion services, might be involved in sweatshops, exploit child labour, pollute the environment, or conduct research or pharmaceutical testing on animals) - they all have as much right as any other organisation to apply to the HSCIC for your care.data, and buy it.

They just have to know how to ask for the information.


No control without opt-out

care.data is all or nothing.

There is no "anonymised data only" option with care.data
There is no "NHS only" option with care.data
There is no "only to not-for-profit organisations" with care.data
There is no "UK organisations only" option with care.data
There is no "research only" option with care.data
There is no "ethical uses only" option with care.data

You cannot track your data once sold - you will not be able to trace where your data went, or whether it was sold on under a commercial re-use license, to whom, and for what further purpose.

You cannot find out when aggregate, anonymised or pseudonymised data about you has been sold, to whom, for what price, or for what purpose.

The HSCIC classifies aggregate, anonymised and pseudonymised data sales as exempt from the jurisdiction of the Data Protection Act.

The only control that you have over data that the HSCIC holds, or might hold, about you is to opt-out of care.data.

When you opt-out, your GP will add either or both of two codes, "electronic flags", to your GP records, known as 9Nu0 and 9Nu4.


One flag, known as 9Nu0, will ensure no information whatsoever from your GP record is uploaded to care.data.

With this flag in place, no data whatsoever from your GP record will be uploaded to the HSCIC, and so no data obtained from your GP record can be released or sold, in any format (aggregate, anonymised, pseudonymised or clearly identifiable).

The HSCIC will then be unable to release or sell information from your GP record to insurance companies, pharmaceutical organisations, private providers or government departments, in this country or abroad. It won't be able to sell it to anyone - because it won't have your GP information in the first place.

All the HSCIC could then do is release or sell information obtained from your existing HES record (which it has been doing anyway, for years).


The other flag, known as 9Nu4, will ensure that any data held by the HSCIC, whether extracted from your GP record (if you haven't opted out) or other sourced data (such as HES), will not be released or sold to any organisation in a clearly identifiable format.

With both the 9Nu0 and the 9Nu4 opt-outs in force, all the HSCIC could then do is release or sell aggregate, anonymised or pseudonymised data obtained from your existing HES record (which it has been doing anyway, for years).

Be aware that the 9Nu4 code alone does not stop the release or sale of:

obtained from your uploaded GP information.

To prevent those, you must ensure that no GP information whatsoever is uploaded to the HSCIC in the first place - by means of the 9Nu0 code as well.


care.data and medical research

Opting out of care.data will have no effect on aggregate information about you being shared within the NHS to help medical research, as it always has been.

Many of the so-called "potential benefits" of care.data are already being achieved, or could easily be achieved, via aggregate data uploaded from GP systems as part of the Quality and Outcomes Framework (QoF) - data that cannot identify you.

Data extracted from GP systems - primary care data - is important for research and to improve care and outcomes. But such data is already being provided, in aggregate and completely anonymised ways, and in identifiable formats with the explicit consent of patients, and care.data is not required for this to continue.

Opting out of care.data in no way prevents you from agreeing - with your explicit consent - to partake in high-quality medical research based at your GP surgery, particularly if your surgery is a Research Ready accredited practice.

Participation in such research is only ever with your full, explicit consent, and you choose the type of research that you wish to be contribute to, and the organisation that you allow your medical information to be shared with.

Your GP knows your medical history and can ascertain whether your particular medical circumstances might mean that you would be a useful candidate to help a particular line of research.

Opting out of care.data will not prohibit your GP from writing to you to invite you to take part in such research, should you wish to.

There should be no conflict between good research, good ethics and good medical care.

Remember, if you do not opt-out then you cannot specify that your uploaded GP data is only released or sold by the HSCIC for medical research purposes, only released or sold to research organisations within the NHS, or released or sold only for research studies that you approve and find ethically acceptable.

And opting out of care data will not stop you from:


care.data and your direct medical care

Opting out of care.data will have no effect on the medical care that you receive either from your GP surgery or from anywhere else within the NHS or private sector.

Opting out of care.data will have no effect on your GP surgery and the way that it is paid by the NHS or on the services that it provides.

Opting out of care.data will have no effect on the way that any hospital is paid by the NHS for treating you.

If medical staff are authorised to, and have access to that information (for example if they are enabled to, and are using, the Summary Care Record, and you have agreed to have a Summary Care Record created for you) then your opt-out of care.data will have absolutely no effect on that whatsoever.

The government has set ambitious targets for one third of all ambulance services, NHS 111 call centres and A&E departments to have access to patients' GP records by the end of this year. Your opt-out of care.data will have absolutely no effect on that whatsoever, because these organisations will not be accessing care.data to achieve this requirement.

If medical staff are authorised to access your electronic hospital records (if any exist at a given hospital) then your opt-out of care.data will have absolutely no effect on that whatsoever.

Opting out of care.data will have absolutely no effect whatsoever on the way your GP records are stored or accessed electronically by your surgery.

Opting out of care.data will have absolutely no effect whatsoever on the way that your GP provides your medical care.

It will not affect your prescriptions, vaccinations, screening procedures, investigations, monitoring of chronic conditions or referrals to specialists.

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, as these are not secondary uses of your data but primary uses required for your direct clinical care.

If you opt-out of care.data, you can still be referred to a specialist under Choose & Book, your surgery can still manage your prescriptions via the Electronic Prescription Service, you can continue to book appointments online, request your prescriptions online, and continue to email, or securely message, your GP or surgery (if your surgery offers these).

Opting out of care.data will have no effect whatsoever on your relationship with your GP surgery.

Whether or not you opt-out is immaterial to your GP.

And you certainly don't need your GP's approval or permission to opt-out of care.data .


care.data and accessing your medical record online

Opting out of care.data will have no effect on you accessing your medical record online (if and when this is offered to you by your GP surgery).

From 1st April 2015 all patients are able to access their GP records electronically if they wish to. And this is not - and will never be - via care.data.

Remember, medical staff treating you in GP surgeries, hospitals, A&E, pharmacies, NHS 111 call centres and GP out-of-hours centres will not access, or be able to access, the care.data database.

And nor will you.

You can find out about accessing your medical record online in this factsheet. EMIS is one GP software system that already offers this, but the other GP software systems will be doing this as well.

If you are interested in obtaining secure records access then just fill in this form and hand it in to your GP surgery.


In addition, care,data has absolutely nothing to do with the ability to securely access some aspects of your hospital records online, again only at your explicit request.

These portals include Patient Portal and Patient View.


care.data and the Summary Care Record (SCR) are two entirely separate projects

The Summary Care Record (SCR) is a national centralised database of medical information (allergies and medication, initially) extracted and uploaded from patients' GP records. This project's aims are to make this information potentially available to emergency doctors (in A&E and GP out-of-hours centres countrywide).

For further information about the Summary Care Record, please see my other site.

You will still need to opt-out to prevent care.data uploads even if you have already opted out of the Summary Care Record.

Summary Care Record opt-outs will not prevent care.data uploads.

Opting out of one database does not mean that you have automatically opted-out of the other.

You can have a Summary Care Record but opt-out of care.data

You can agree to care.data extractions but opt-out of the Summary Care Record

Opting out of either database, or both, will not in any way affect the medical care that you receive from your GP surgery.


care.data and the Hampshire Health Record (HHR) are two entirely separate projects

The Hampshire Health Record is a locally accessible centralised database of medical information (the entire GP record as it happens) extracted and uploaded from patients' GP records. This project's aims are to make this information potentially available to healthcare professionals across Hampshire.

For further information about the Hampshire Health Record, please see my other site.

You will still need to opt-out to prevent care.data uploads even if you have already opted out of the Hampshire Health Record.

Hampshire Health Record opt-outs will not prevent care.data uploads.

Opting out of one database does not mean that you have automatically opted-out of the other.

You can have a Hampshire Health Record but opt-out of care.data

You can agree to care.data extractions but opt-out of the Hampshire Health Record

Opting out of either database, or both, will not in any way affect the medical care that you receive from your GP surgery.



care.data and EMIS Web data streaming are two entirely separate data sharing schemes.

For further information about true, interoperable data streaming, please visit www.nhsdatasharing.info, or alternatively have a look at this example factsheet from North East Hampshire and Farnham.

EMIS Web data streaming, sometimes referred to as the MIG, involves information from your GP record being "streamed" in real time and on-demand, meaning that data from your GP record is neither extracted, nor uploaded, nor sent anywhere. The data remains within the surgery database and select organisations, such as your local Accident and Emergency department or GP out-of-hours centre, are only allowed to "view" it.

It is a primary use of your medical information, for the purpose of delivering direct medical care.

Since no information from your GP record is extracted or uploaded anywhere with data streaming, there are no secondary uses of the information made available.

If data streaming is available in your area, then:

Opting out of one scheme will not automatically opt you out of the other.

Opting-out of either scheme, or both, will not in any way affect the medical care that you receive from your GP surgery.


care.data and Risk stratification are entirely separate projects

Though they are similar.

For further information about risk stratification schemes, please visit www.nhsdatasharing.info

Across the country, many GP surgeries are uploading their patients' entire GP records to third party databases, for analysis and scoring, in order to identify so-called high risk patients who are likely to cost the NHS a lot of money.

In most cases, opting out of care.data will also opt you out of risk stratification.

If you really want to be sure, download and use the form from www.nhsdatabase.info that opts you out of all of the NHS Databases.

Opting out of either care.data or risk stratification, or both, will not in any way affect the medical care that you receive from your GP surgery.


Can I get my uploaded information deleted?

If you do nothing, i.e. you do not opt-out, then your medical information will be extracted and uploaded to the HSCIC.

The HSCIC has no intention of ever deleting your care.data. In fact, your care.data record will be added to on a regular basis by ongoing uploads from your GP records (unless you opt-out).

Even after you die, your uploaded data can continue to be released or sold, in any format, by the HSCIC - eternally.

You cannot - ever - get your uploaded data deleted.

And it's just the same when it comes to trying to get deleted data sold about you to organisations such as credit reference agencies and insurance companies.

The HSCIC won't tell you when data about you has been sold in aggregate, anonymised or pseudonymised formats - so you won't have any idea where your data has gone.

The HSCIC cannot track your data, and does not know whether organisations have sold your data onwards, to whom, for what price, and for what purpose. And so, nor can you.

The HSCIC cannot compel any organisation to delete data that it has sold it to. And so, nor can you.


Opting out of care.data

When can I opt-out of my GP data upload?

You can request that the codes are added right now, before extractions and uploads to care.data have begun, or you can request that the codes are added at any time thereafter.

The 9Nu0 opt-out

If the 9Nu0 opt-out code is added before your initial GP dataset upload (provisionally scheduled for Autumn) then:

If the 9Nu0 opt-out code is added after your initial GP dataset upload, or subsequent to any monthly GP uploads to your care.data record, then:

The 9Nu4 opt-out

Your personal confidential data, as held by the HSCIC, and from whatever source, can be released, is already being released, and will be released in a clearly identifiable format (personal confidential data), as detailed above.

As soon as the 9Nu4 opt-out code is added to your GP record and transmitted to the HSCIC, then no further clearly identifiable data releases about you will occur from the HSCIC.


How do I opt-out?

If you have decided to opt out of care.data then it's very easy to do so.

If you want to opt-out of care.data 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.


First, download a care.data 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 :

If you prefer, you can just write a letter to your surgery.

Alternatively, you can tell your GP that you wish to opt-out the next time that you see him or her (if you have an appointment planned for the near future).
(Don't make an appointment to see him or her just to opt-out though, please!)

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.

Ensure that you make your opt-out wishes known to your GP surgery.
No-one else can add the electronic flags to your GP records.

Do not send your opt-forms or letters to the HSCIC.


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 and 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.

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.

You can find out more about the effects of the 9Nu0 (secondary uses) opt-out at www.nhsdatabase.info



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

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


Remember: if you opt-out now you can opt-in at at any time in the future - if you are happy to, when you are happy to, and at a time of your choosing. It's your data, you should be in control.

If you do opt back in to care.data, your GP will add different electronic flags that will permit uploading to the HSCIC and/or the release of other clearly identifiable information from the HSCIC to organisations.



So what do I need to do to ensure the maximum protection for my personal and confidential medical information, both at my GP surgery and at the HSCIC?


Ask your GP surgery to add both the 9Nu0 and the 9Nu4 codes to your GP records.

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

Make a request to the HSCIC that any new HES/SUS data is anonymised upon receipt.

This will prevent pseudonymised data from any new HES uploads being released or sold.

The HSCIC will remove, on this request, all identifiable information held on you by them, other than what is required by law to have you registered as an NHS patient and to enable the provision of your direct medical care (so completing this form will not, for example, stop you being called upon for any relevant screening or immunisation programmes). Detailed information about this is provided in the opt-out form.

Opting out of care.data, or anonymising your HES/SUS data, does not mean that you are "opting out" of the NHS, in any way.

This summary shows the effects of the various combinations of care.data opt-outs.


Feel free to send me constructive comments about this site.

Neil.Bhatia@nhs.net

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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)


Last updated: 22.04.16

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