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Better information means better care

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. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all.

It is important that the NHS can use this information to get a complete picture of what is happening across health and social care and to plan services according to what works best. The new system will provide joined-up information about the care received from all of the different parts of the health service, including hospitals and GP practices.

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. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.

Sharing information about the care you have received helps us to understand the health needs of everyone and the quality of the treatment and care provided and reduce inequalities in the care provided. The new system will also provide information that will enable the public to hold the NHS to account and ensure that any unacceptable standards of care are identified as quickly as possible. Information will help to:

  • find more effective ways of preventing, treating and managing illnesses
  • make sure that any changes or improvements to services reflect the needs of the local patients
  • understand who is most at risk of particular diseases and conditions, so those who can plan care can provide preventative services
  • improve your understanding of the outcomes of care, giving you greater confidence in health and social care services
  • identify who could be at risk of a condition or would benefit from a particular treatment
  • make sure that the NHS organisations receive the correct payments for the services they provide
  • improve the public’s understanding of the outcomes of care, giving them confidence in health and care services
  • guide decisions about how to manage NHS resources so that they can best support the treatment and management of illness for all patients 

It is important that you read the leaflet Better information means better care (PDF, 2Mb) so that you understand how information in medical records can be used to improve the way that healthcare is delivered.

If you are happy for your information to be used then you do not need to do anything. But if you have concerns or if you do not want information that identifies you from being shared outside your GP practice, as described here, inform a member of staff at your practice. 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 will also be able to restrict the use of information held by other places you receive care from. However, this will not affect the care you receive.

You can change your mind at any time and as many times as you wish. Just inform your GP practice and ask them to record your wishes. 

There will be a phased roll out for the programme beginning in autumn 2014 when information from between 100-500 GP practices will be extracted and sent to the HSCIC. The GP data will be linked with the hospital data already held by the HSCIC.

For more information about how data is collected and shared, including confidentiality, read the Q&A below or the Patient FAQs (PDF, 213kb) produced by the HSCIC and NHS England.

Call our dedicated patient information line in relation to data sharing on 0300 456 3531. Translation and text phone services are also available.

 

Why do I need to read the leaflet ‘Better information means better care’?

The leaflet contains important information about your health records. It explains that NHS organisations share information about the care that you receive with those who plan health and social care services, as well as with approved researchers and organisations outside the NHS, if this may benefit patient care.

It is important you know how information about your health is used, shared and protected and what choices you have.

Why is information collected?

By using information about the care you have received, those involved in providing health and care services can see how well different services are performing and where improvements need to be made.

Sharing information about the care you have received helps us understand the health needs of everyone and the quality of the treatment and care being provided. It also helps researchers by supporting studies that identify patterns in diseases, responses to treatments, and the effectiveness of different services.

What is the 'secure environment' mentioned in the leaflet?

The secure environment is called the Health and Social Care Information Centre, which is a public body based in Leeds. The Health and Social Care Information Centre was set up in April 2013 as the central source of health and social care information in England.

The role of the Health and Social Care Information Centre is to ensure that high quality information is used appropriately to improve patient care. The organisation has legal powers to collect and analyse information from all providers of NHS care. It is committed, and legally bound to the very highest standards of privacy, security and confidentiality to ensure that your confidential information is protected at all times. Access to information is strictly controlled. Further information about the Health and Social Care Information Centre is available at www.hscic.gov.uk/patientconf

What is changing?

For decades, the NHS has been using information from health records for purposes other than providing your direct care, for example to support research and to help plan new health services. However, we need to upgrade our information systems and collect information from more places where you may receive care. Doing so will make sure that we have joined-up information about all parts of the NHS, as well as public health and social care services.

Why are these changes needed?

The NHS has some of the best information systems in the world. Since the 1980s, we have been collecting information about every hospital admission, nationwide. This information is brought together at the Health and Social Care Information Centre, where it is anonymised (see question seven, 'Will confidential information be shared?'). The information has been invaluable for monitoring the quality of hospital care, for planning NHS services, and for conducting research into new treatments.

However, the information collected is incomplete with areas such as prescribing and test results not currently included. Additionally, while we have this type of information already for some of the care provided outside hospitals, there are significant gaps. As a result, it is not currently possible for us to see a complete picture of the care that patients receive. 

NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address these gaps. Known as the care.data programme, this initiative has been designed to ensure that there is more rounded information available to citizens, patients, clinicians, researchers and the people that plan health and care services. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all.

When will these changes occur?

The first change is that information from between 100-500 GP practices will be brought in to the Health and Social Care Information Centre in autumn 2014. This information will be joined to the hospital information that is already held by the Health and Social Care Information Centre. In the future, we will also collect information from different parts of the health and social care system to create a joined up picture of all the care delivered.

Will confidential information be shared?

 The Health and Social Care Information Centre collects information from a range of places such as your GP practice, hospitals and community services. This information includes postcodes and dates of birth so that the information about an individual can be joined together accurately. However, there are very strict rules about what information the Health and Social Care Information Centre can release to the NHS and outside organisations. Information can be released in three ways:

  • Anonymised information: this information does not identify any individuals, nor small numbers of patients with rare characteristics or diseases. Anonymous information may be published in public reports produced by the HSCIC. 
  • Potentially identifiable information: this is information about individual patients but it does not include any identifiers (that is, there are no personal details such as your date of birth and postcode included).  We would never publish this type information because there is a risk that you might be identified. For example, if you were the only person in an area who had a rare disease then someone may work out that it was you even though your identifiers were not included. As a result, there are strict controls about how we release potentially identifiable information. For example, we would only ever release this type of information to approved organisations for approved purposes, and there must be a legal contract in place with penalties for any misuse of the information.  
  • Identifiable information: information that identifies you can only be disclosed where you have given your explicit consent (such as where you have agreed to participate in a research study) or there is a legal basis for doing so (see question 22 in the full list of Patient FAQs). 

What kinds of information sharing can I object to?

There are two types of information sharing you can object to:

  • You can object to information containing data that identifies you from leaving your GP practice. This type of objection will prevent the identifiable information held in your GP record from being sent to the Health and Social Care Information Centre’s secure environment. It will also prevent researchers who have gained legal approval (see question 22 in the full list of Patient FAQs) from receiving your health information.
  • Information from other places where you receive care, such as hospitals and community services is collected nationally by the Health and Social Care Information Centre. The Health and Social Care Information Centre only releases this information in identifiable form where there is legal approval for doing so such as for medical research (see question 22 in the full list of Patient FAQs).

This legal approval is only granted where it is:

  • in the interests of patients or the wider public to do so; and
  • impractical to obtain each individual patient’s consent; and
  • not possible to use anonymised data.

If you object, this type of information will not leave the Health and Social Care Information Centre to researchers with approval. The only exceptions are very rare circumstances such as a civil emergency or a public health emergency.

Will my whole GP record be used?

No. Only the agreed amount of information required will be used. GP representatives and an independent advisory group have been involved in deciding which health, care and treatment information should be extracted. Your date of birth, postcode, NHS number, and gender (but not your name or full address) will be used to link your records in a secure environment at the Health and Social Care Information Centre but will then be removed (see question 3 in the full list of Patient FAQs).

Once this information has been linked, a new record will be created with a reference number that does not identify you. This new record will not contain any information that identifies you.

I can’t get in to my GP Practice to object, what should I do?

Please contact your GP Practice by telephone or email to discuss with them what arrangement would work best. If you have a query or a question about the leaflet you received through your letterbox, you can call our Patient Information line on 0300 456 3531.

Comments

The 191 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Keith78 said on 11 August 2014

First my posts appears, then disappears, then appears again, then a second one gets repeated. If you can't even get your web site working properly, what hope is there for the security of a national database?

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Keith78 said on 11 August 2014

It seems that the police now want access to our medical data as well (Radio 4, PM, 11/08/2014).

Of course that proposal is being presented as being for our own good, to help the police deal with vulnerable people. But it undoubtedly the thin end of the wedge.

I would trust the police marginally more than I trust this government or profit-motivated multi-nationals, but I still don't want them to have access to my most private and personal data. It is not just that it might get used for all sorts of underhand schemes (remember all the spying and smearing of justice campaign families that recently came to light), but the more agencies that have this data the more likely it is to be accessed by unauthorised people and used for goodness know what purpose.

I already opted out when this was first mooted in January. But the scheme has only been delayed for 6 months I believe, so I am going to have to check that my original opt out still stands for the new data extraction planned for September/October.

This is all an unacceptable erosion of our privacy. Together with the proposed sell-off of our tax data, the forthcoming compulsory installation of telematics (spy) boxes in cars, CCTV everywhere, and numerous other schemes to monitor our activities, the British people are being treated like cattle.

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GregerE said on 11 July 2014

Significant lapses have now been shown in the records already collected and released by NHS. An audit, led by Sir Nick Partridge, found that 3,059 data releases had taken place between 2005 and 2013 – 10% of these were checked. The review found "lapses in the strict arrangements that were supposed to be in place to ensure that people's personal data would never be used improperly" were found. There was even a research programme accessing NHS patient identifiable data without any legal authority in 2014.

Time to opt out. Where do I get the form? Not available on NHS choices?

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HSCIC Fly on the Wall said on 20 May 2014

Since the leaflet was 'junked' to homes little has changed to address individuals concerns about the vague 'icity' of this programme. Apologies, I forgot it's been postponed, there's plenty of time!

I've researched this programme for over six months in detail and my enquiries and replies from HSCIC, NHS England and the plethora of connected government depart's/org's has made me somewhat cynical!

Please watch this You Tube video (no it's not a conspiracy video) - 'Health Select Committee on Care.data 25 2 2014' and you will see why? The first committee representatives from BMA and medical research charities, express serious concerns, are critical how it was handled and mention it needs 'rewiring'. They are not against the principle, like myself, but it's clear much more needs to be done.

It's a long video so jump to 1 hr 20 mins to see the Chairman mention these concerns to the second representatives, the Government - Parliamentary Under Secretary of State for Health, HSCIC - Director of Information and Data Services and NHS England - National Director for Patients and Information. In my view, some of these representatives, displayed an arrogant and unprofessional attitude, confirmed my concerns and provided me with a clear path what to do.

Recently, a consulting company purchased data for in/outpatients and A&E, uploaded the data offshore to a famous company search engine servers. The data didn't contain links to specific individuals but two weeks after the consulting company could produce interactive maps in seconds! Think about it, potentially able to target areas by post code, type of patients, illness, treatment etc?

This is not an isolated incident, and I'm not saying HSCIC were responsible but it's clear what money can do. The HSCIC Director seemed to believe that the up to £500,000 fine would deter companies doing this? I think not.

I and two of my family have been targeted by these companies, believe me it's not pleasant.

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Uta87 said on 17 May 2014

The law is specially written in favour of HSCIC and allows it to bypass usual confidentiality requirements. Essentially, it remains LEGAL for the HSCIC to share any information whether they have patient agreement or not. All it needs is for the Secretary of State for Health or the Health Research Authority (HRA) to grant approval. They do this without any patient input and only take advice from the Confidentiality Advisory Group. Essentially the patient has no ability to stop this other than opt out of sharing. Even the opt out is only by agreement of the Secretary of State. Patients, under the law, have no rights to stop data being shared. Data sharing, and selling patient data, with or without consent, is not covered by NHS constituion.

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Zherbe said on 05 May 2014

I have declined my NHS health check as I understand this is commissioned by Locla Authority and some now ask commercial organisations to complete the check and collect the data for processing. I do not trust the government with my data, and now I cannot trust my doctor ot the wider NHS. The data is being sold not shared. This website should explain they mean the same thing to NHS and HSCIC. Patients will take a different view. I have opted out.

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PetePassword said on 05 April 2014

This site is broken. It just printed my comment three times, I sent it just once. Others seem to have commented more than once with the same comment. Can they run a massive database safely?

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PetePassword said on 05 April 2014

I intend to requerst my GP not to share my records in this way, adding them to a database which already has hospital records without once asking patients' permission. After a short stay in hospital last year after an accident and an operation, a few weeks later I started receiving 'junk' mail addressed to me at my address advertising such things as stair lifts, hearing aids and life insurancwe. Since I am a pensioner, these were clearly targeted with an image of a typical pensioner in mind which means they knew not just my name and address, but also my age. I don't trust politicians, our GP records will be similarly sold without anonymising if allowed to be added to this database. Be warned, and don't trust anything government tells you.

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Ayr57 said on 07 March 2014

In response to Kevin000 according to HSCIC customers may include academics and universities, healthcare commissioners and providers, third sector organisations, information intermediaries and commercial organisations including life science companies.
http://www.hscic.gov.uk/dles links to more details
This means drug and insurance companies will be able to apply to HSCIC to gain access to the database.

There is also a price list
http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

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Betty Aventine said on 05 March 2014

HSCIC appear to have already let hospital data out a private company (consultancy) which then made the anonymised data publicly available. It was then possible to track some individual medical records due to small data numbers. The breached data was immediately removed.

Once the HSCIC have the data the patient is not longer in control.

The HSCIC have issued a statement.
http://www.hscic.gov.uk/article/3947/Statement-Use-of-data-by-Earthware-UK

The update on this will be interesting and cannot be blamed on the old NHS Information service which operated under the previous rules. The HSCIC have always said they operate under much stricter controls.

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bluepenny123 said on 05 March 2014

What it fails to mention is that your 'anonymised' information will also be available for sale to private companies! Very poor communication indeed.

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Kevin000 said on 02 March 2014

I can understand the uses of the data within the NHS and even (completely) anonymised information being used by outside organisations for statistical purposes. Could someone explain to me, with examples, why “approved organisations” would ever need access to potentially identifiable information.

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Campeonato said on 01 March 2014

I read the leaflet. It does not explain about care.data - in fact care.data is not even mentioned. This has nothing to do with sharing my data with other doctors or health professionals. The data is collected by HSCIC not 'The NHS' and HSCIC are not asking for consent. They are forcing GPs to upload my data.. This is basically a decision made for me, without me. It is a disgrace and will prevent patients being honest with their GP over their medical issues, mental health, domestic violence, abortions, etc.

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David Conroy said on 01 March 2014

According to a letter in Wednesday's Times from a member of the Royal College of Physicians, the Health and Social Care Information Centre (HSCIC) applied for and was granted exemption from the provisions of the Data Protection Act and thst speaks volumes! Can someone from the NHS or HSCIC explain why an application was sought and, in particular, why it was granted?!

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David Conroy said on 01 March 2014

According to a letter in Wednesday's Times from Clive A Layton. a member of the Royal Society of Physicians, the Care.Data scheme is exempt from the provisions of the Data Protection Act and that speak volumes! Can someone from HSCIC explain why an exemption was applied for and granted?!!!

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Nouvo Cand said on 01 March 2014

I have also considered;

HSCIC is rebranded with new rules but the old system gave us an NHS service which handed over 13 years worth of hospital data covering 47 million patients to the Institute and Faculty of Actuaries to "improve the accuracy of pricing" The release was issued by the HSCIC predecessor but carried the HSCIC logo. This data was then combined with secondary sources, including credit ratings data, in order to influence insurance premiums. - the ultimate purpose of the data extract was to create information that would help insurance companies' cash flow.

The new ACT and rules allow data to be sought from other government departments such as Dept of Work and Pensions.

If provides police and other agencies easier access in a single database of records sought under RIPA and other crime detection legislation.

Data may leave the country - Memorandum of Understanding Between UK and US: http://www.healthit.gov/sites/default/files/hhsnhs_mou_final_jan_21.pdf which explicitly discusses data sharing of such data between UK and US.

Pseudonymisation at source is not ready

GPs cannot stop data being used for other purposes once it has left the practice.

You can opt out at any time but it is not known how your previous data stored by HSCIC and Care.Data will or can be deleted.

I have decided not to delay my Opt Out.

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InformedPerson21 said on 28 February 2014

After reading a handful of comments, I feel shocked that people in this country can make assumptions based on nothing more than media propaganda and hearsay.

If most of you took the time to read this site fully they would realise a few simple facts:

1. This scheme has not been launched. The information has been publicized for the very reason that patients have the right to decide before your information is shared.

2. The information is shared within medical bodies to form the research initially. It is then completely anonymised before anyone outside of NHS can purchase it, or even see it.

3. There is no one trying to persuade you to share your information. This campaign allows the general public to have a choice. If you don't feel comfortable with this information, then opt out! Call your GP, fill in a form, say something about it.

I feel really sad seeing stories about people feeling as though they can't trust their GP's. Please be assured that the Data Protection Act 1998 is a law. This is the very reason you have this information.

Please don't shout at a GP, or worse the admin staff. I promise that they're not calling up Boots after you've been in and seen them to sell them a piece of juicy gossip about your verrucas. Better information, means better care.

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BevansAspirations said on 28 February 2014

The NHS is being privatised. I do not want my data ending up in the hands of corporations whose profit focus undermines the aims and ethics of the NHS.

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nopillsplease said on 26 February 2014

This ill conceived scheme will destroy patient / doctor confidentiality. Patients will not confide in their doctor, certain personal information, that may be absolutely necessary for diagnoses and treatment, knowing that outside agencies may have access to it. I myself have witheld information from my doctor and not answered questions truthfully, being aware that the information may go beyond the surgery door. I may be even more guarded in future knowing that personal information will actually leave the surgery.

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fmarouet said on 26 February 2014

Frightening, isn't it !?
Data is big business - especially sharing it.
Buy a new car today (or certainly after 2015) and that little black-box somewhere under the bonnet will report on what you have been upto. You agreed to this when you bought the car: didn't you read the small print in terms and conditions? Who will have access to this data and will it be used for the right reasons?

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JohnMurray said on 25 February 2014

It is not the NHS. The data is collected by the HSCIC (health and social care information centre).
The GP, and practice, have no option but to allow the data extraction (health and social care reform act).
You can opt-out (make sure you use the RIGHT form, many GP practices are giving the wrong form) by going to: http://medconfidential.org/how-to-opt-out/
and printing the form. Hand it to your surgery, and then ask the practice manager, later, if it has been acted upon.
Either way, eventually your data will be included. The law will change/be-changed, to allow it. Betcha.

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Manor_Road_Dormouse said on 25 February 2014

This is a very interesting thread.

Hot news....

The House of Commons Health Committee is now in session and taking evidence on the very questions that are being asked by forum members...

Witnesses called include....
Phil Booth, Co-ordinator, medConfidential
Nick Pickles, Director, Big Brother Watch
Sharmila Nebhrajani, Chief Executive, Association of Medical Research Charities
Professor Peter Weissberg, Medical Director, British Heart Foundation
Dr Daniel Poulter MP, Parliamentary Under Secretary of State for Health
Tim Kelsey, National Director for Patients and Information, NHS England
Max Jones, Director of Information and Data Services, Health and Social Care Information Centre

The link is here, and i am sure it will be available in archive once the session has closed.
http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14949&wfs=true

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User539645 said on 24 February 2014

Consider questions like this..

1 - Does pill X lead to a greater incidence of stoke/ heart problems / cancer etc.
2 - Does smoking with pill y lead to particualr issues?
3 - Is a particualr type of cancer more prevelant in a particuler area? If so is there anything else in those peoples medical records to explain why?

Questions of this type, and more, can be answered by analysing mass amounts of data, which isn't available on this scale otherwise.

It's invaluable for research and will help improve the health of the nation.

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NiteOwls said on 23 February 2014

What does make the NHS flipping think to share my data with other people without asking for my consent? Have they ever heard about the flipping data protection act? That is a breach of confidentiality!!

I'm outright fuming that a government organization like the NHS can sell my personal data without even asking for permission!

Another good reason to leave this country, it has total gone to the rats!!

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boneman said on 22 February 2014

- I object to your ill-considered care.data exercise increasing the load on my already over-loaded GP practice, by making the GP's legally responsible for publicising your deeply flawed principles to their patients. It can only impact adversely on their provision of service.

- If care.data is so manifestly in the interests of all, why don't you take the obvious ethical approach, and make it OPT-IN by default?

- If you are so concerned with transparency, choice and informing the patient, why do you not even mention 'care.data' in your information leaflet? - which, incidentally, I have just read for the first time here. Neither I, or anyone I have asked (except one) can remember ever seeing one.

- How valuable and accurate will your data be, given the large an justified opt-out that is now likely happen, due to your inept handling of this exercise - and given the disincentive to discuss sensitive information with your GP, knowing it will be sold to undisclosed 3rd parties, under terms subject to change in the future? A good GP will simply 'not write down' anything contentious.

- Everyone should ask their own GP, and any nurses, physios, etc. they know - "Will you be opting out?". I think the answers will surprise you.

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Tooscaredtosay said on 21 February 2014

I wonder what arrangements GCHQ and our security services have made to access care.data? What medical conditions would pose a security threat? Would the Americans want the data to search for people with certain illnesses?

What if the government decides that the Dept of Work and Pensions should have access to care.data to assist welfare reform?

Will we see a new revolving door open to mix senior NHS posts and well-paid consultancies and jobs in the private insurance, healthcare and IT sectors?

Just how will the potential for personal, corporate and political profit affect care.data and the relationship between GP and patient?

I opted out I hope.

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imindoors said on 21 February 2014

Having recently returned from hospital after an extended stay it is dismaying to see the poor standard of care provided by agency care assistants on the evening shifts. Often with a poor standard of English and quite frankly not a days work between then. However that is another matter, to while away those long nights where there is nothing for them to do you would see them glued to nurses/ doctors computers with direct access to patients records. Confidential ??

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Sean Ellis said on 21 February 2014

Aha - found it. Here'a a link to a PDF of the form that our local GP uses. (Your GP may use a different one.)

http://www.drvictoriamuir.co.uk/pdfs/Care%20data%20opt%20out%20form.pdf

Why isn't that form hosted here?

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Sean Ellis said on 21 February 2014

I don't mind sharing my data for the good of all, but I want it to be anonymised, and not sold to private companies as part of the wider privatization of NHS services.

Having attempted to discover a URL to opt-out, I discover that I have to ferry dead trees around the place to do this. Why can't I opt out online?

So, I downloaded and printed the opt-out form from http://medconfidential.org/ and filled it in for my whole family. My wife dropped it off - our GP refused to accept it. This makes a mockery of the promise that we "just have to tell" our GPs to opt out.

In return they only gave us a different opt-out form, plus another copy of the care.data leaflet. This asks for exactly the same data as is on the medconfidential.org form, but is for one patient only. We were given one copy.

Naturally I assumed was the "official" form so I came here looking for a downloadable version so that I can print out a few more copies for the rest of the family.

Is there really no central opt-out form? The fact that this kind of basic mechanism isn't in place doesn't make me feel any more confident about the rest of the system, and I wasn't confident to start with.

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JohnFTEng said on 21 February 2014

I find it insulting that I'm not allowed a copy of my NHS records yet they are to made available to anyone who is a "researcher". Also, the security of online data is wholly suspect. Many organisations from banks to insurance companies to Google have suffered hacks where millions of records are stolen.I shall definitely opt out.

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OurDataNotYours said on 21 February 2014

If the data is to be available to the NHS and third parties digitally, there surely in turn has to be a way to opt-out digitally.

To require a printer or a bureaucratically-vexatious visit to an already-busy surgery to opt out of the Care.Data system demonstrates a lack of care by our decision makers for both National Health Service users and the surgeries tasked with administering the opt out process.

I'm assuming that the reason there is no online opt-out is because those in charge have foreseen that when the public are made aware, via Facebook and Twitter of an accessible means of not having one's medical data made available to corporate third parties, it would make the scheme less profitably viable

This should explain exactly what is wrong with the opt-out system as it stands.

It is our data not yours; we may implicitly consent to healthcare professionals we see on a face-to-face basis having access to our records but I would hope that you understand unequivocably that the medical data you hold about me is mine.
I trust that you would also afford my fellow countrymen this simple right.

If you're so confident of your upcoming PR campaign to make us aware of the "benefits of Care.Data", why not make it opt-in?

Or, in the spirit of "Private Public Partnership", could those people that opt-in be given their share of the revenue?
After all, you did say you wanted patients to have more control over their data!

Oh wow. I just had the perfect idea... You could let each of us sell our own medical records on the open market!

"But that's crazy!" you say.

"Yes, truly crazy! And that's the Care.Data programme writ large." says I, with nary a glimmer of irony.

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fmarouet said on 21 February 2014

Only a week to go, and they have pulled it off.
So well publicised too: discussed on Radio 4 and in the Guardian - wow must cover about 2% of the population. 26 millon leaflets sent out and only actully seen by 29% of the recipients because itwas wrapped in a pizza flyer.

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AlieH said on 20 February 2014

Please note that sharing the data is not just to the NHS. The data will also be shared to others like Insurance companies. It is outrageous that the NHS is not open about this.

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CMilner said on 20 February 2014

I have no particular problem with the general idea of data sharing, but I am greatly concerned about the underhand way in which this is being done. Like (apparently) the majority here my husband and I recieved no notification of this, nor were there public messages informing the public that this information was coming (or supposed to be). The fact that ATOS is involved fills me with horror, as an ex DWP officer I am well aware of the shambles that Atos (and the ConDem) government have created. I trust that ATOS will be strongly supervised and fired from the job if/when they start making mistakes!

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wheelchair500 said on 19 February 2014

I would like to know how i can opt out as i am not in favour, I already face discrimination at the GP

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Jaidy91 said on 19 February 2014

www.medconfidential.org/how-to-opt-out use this website to download the form then fill it in and take it to your GP.

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Jaidy91 said on 19 February 2014

Apparently there is an opt out form on this site but I can't seem to find it - can anyone shed any light as to where I should be looking. Many thanks.

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Science professional said on 19 February 2014

No information has been circulated - even the local GP surgery knows nothing and has no information. Come on - this is a disaster. I refuse to accept that a serious effort was made to inform the public - rather you hoped we would sleep walk into accepting the collection of our data.

When you can confidently guarantee that personal data will never be released to individuals or organizations that may not have the best interests of the individual at heart not just now but for all time... then - and only then will I possibly consider giving my permission.

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zimogen said on 19 February 2014

We are told that these records will be anonomised - yet they will include the full postcode and our NHS number - perhaps other such information - perhaps you could review your needs, most (all?) of which might be met with 'proper' anonimity for the patient.

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MalRP said on 18 February 2014

Say no more - if ATOS are involved, the data is bound to be made available to all and sundry. Just look at the benefits fiasco! NHS England take note - I forbid you to make any of my data public. Do so and the European Court will become involved.

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deadi said on 18 February 2014

In case anyone thought my comment of 14th February on who will process this data was fiction, this is from the ATOS website (http://uk.atos.net/en-uk/home/we-are/news/press-release/2011/pr-2011_12_20_05.html). £8 million - Go figure.

NHS Information Centre awards Atos contract for new General Practice Extraction Service

Supporting the future information needs of the NHS to further improve patient care

London, 20th December 2011


Atos, an international IT services company, today announed that it has been awarded a five-year contract worth £8 million by the NHS Information Centre to supply technical components needed to implement the General Practice Extraction Service (GPES). Specifically, Atos will supply the software system that will produce the queries required to extract specified data from the range of GP practice systems across England.

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catcat29 said on 18 February 2014

We have not received the leaflet about the care.data scheme-nor have several of our neighbours.

I have been looking out for it and am pretty sure I have not missed it- in any case, if half the people supposed to have been sent the information have no recollection of receiving it, by any measure this exercise has failed.

How can not opting out be described as 'informed consent' in these circumstances?

I am in favour of data sharing- but this is a shambles, and a terrible waste of money - and more importantly of public confidence in the ability of the NHS to manage data systems adequately.

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russiandoll69 said on 18 February 2014

I have been able to opt out with my GP over the phone so, much of the rubbish spouted by the NHS is wrong. Oh yes, of course, imagine the absolute horror of someone 'opting out for you without you knowing or wishing to' (which is something I read explaining why we have to get a form from our GP!!). My word, it couldn't get worse than that could it!?
My practice were very helpful; it sounds like they're spending most of their days answering calls from patients who are only just finding out about this due to very recent publicity. We are very lucky to have our NHS in the UK; the only downfall, in my opinion, is that it seems to be run by people who appear to have no profession ability in terms of management or care. Everything has become so convoluted and process driven - keep our personal information where it should be & get back to providing a service for 'health' .

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Geoff 2 said on 18 February 2014

From the details which will be attached to every bodies record, if they have not opted out, i.e. DoB, post code, NHS number and gender how can any organisation say that this will anonymise the record. Any one with any computer programming experience could write a computer programme to find the name using Electoral Roll etc.. Once the name is obtained any unscrupulous organisation could ruin that persons life, even more than it already is in some cases.

I cannot believe the Government and NHS believe they can get this through but I suspect they are hoping most people will not bother to read the leaflet nor do anything about it.

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angrybird05 said on 18 February 2014

We had forgotten about this as we still have not had our leaflet. Does anyone know if childrens records are going to shared? I am so angry about this i thought our records were private not up for auction to the highest bidder.sorry but they can bleat that it is anonymised as much as they like to much private info on people has been lost before.Here goes trying to get in to see my gp to opt out.

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billbanter said on 17 February 2014

The lack of publicity about the biggest change in the relationship between GP and patients is little short of a national disgrace. I read newspapers, frequent social media and rfollow the media but I encountered Care.Data transfer for the first time, by accident, last week!
If any pamphlets were ever sent they have not reached anyone in my area! No other information has been published anywhere else! This is in complete disregard of the ICO Code of Practice whose most basic proactive standards NHS ENGLAND has failed to meet.
Over 70% of the population have received nothing - I fully expect this to be the next scandal like the banks' misselling. Once people realise that their data have been taken without any notice, lawyers will have a prima facie case as the NHS will be unable to provide evidence that they have begun to comply with ICO requirements.

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nopillsplease said on 17 February 2014

Opt out, all government departments are hopeless at protecting personal data. If your data is misused you can expect an apology. Wowee, in the real world you would sue for damages £10s thousands. Also the organization involved would be liable for unlimited fines and individuals for prison. No such safeguards here. Once your data is "out" there is no further control over it, anyone could end up with it and even anonymised data can easily be tagged to a real person.

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RareMary said on 17 February 2014

I am up for sharing information, but what can NHS/government to prevent the data to identify the person, especially if the patients have rare diseases. Some conditions are so rare that it may only have a few people in the UK, and those people can be easily identifiable. And what will the impact or consequence if those people are identified? Lose job? Increase insurance premium? etc.

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annemargholm said on 17 February 2014

Why isn't the Patient decision form allowing us to opt out of the care data programme not available on line, only from GPs' surgeries ?

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User846330 said on 17 February 2014

As another long-time IT worker, I can re-iterate what others have said. Once your data is out of your reach and on a networked system, the cat is out of the bag. (Ever tried herding cats?)

For those fearing that the dissent codes won't be honoured, the only thing to do is wait till later in the process and submit a subject access request to the HSCIC under the data protection act - there's information on how to do this on the ICO website here: http://ico.org.uk/for_the_public/personal_information

Be aware that some medical data is exempt from the DPA. (HSCIC can sell your data, but you may not be allowed to see what they're selling.) If they honour the dissent codes, there should be no information there to withhold.

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CODE4 said on 17 February 2014

NHS leaflet recently received through the post cunningly disguised as junk mail. I would imagine a lot of folk thought it was more junk mail and consigned it to the bin without even realising what it was.

The Information provided does not fill me with confidence. We can only opt out if we approach our overstretched GP surgeries. Quite blatantly the scheme is relying on the public's inertia to make the effort. An opt out form should have accompanied the leaflet. I shall opt out as I strongly resent the fact that I was not given any choice prior to this.

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Elderly Parent said on 17 February 2014

I can see two sides to the issue. My children suffer from various issues and are intolerant of various medical treatments.
One daughter suffered drug induced lupus following a treatment. When I talked to others with her underlying condition I found this reaction is common to those with that condition - but unknown to the medical profession.
On the other side, a poorly designed, managed and implemented scheme is highly dangerous. This scheme which appears to mirror many aspects of the previous scheme planned by Labour, is highly dangerous with its lace tissue paper level of security. It does not need to be this stupidly designed.
My family and I shall be opting out in spite of its possible benefits.

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Carla_M said on 16 February 2014

If it was amongst junk mail, I would have thrown the leaflet out. None of my junk mail is usually worth reading! I certainly didn't notice it, and only found out through media and petitions. Appallingly managed.

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doverlizzi said on 15 February 2014

This inertia selling of our most private personal records, is utterly indefensible! It is not anonimised before being sold as it is up to the purchaser to anonomise the records. What is there to stop a third party then selling the information on to another party? Who knows where this information will end up? As the records will include our GP, postcode and date of birth, how hard will it be to find out our names and fu;ll addresses? You would only need to employ a very cheap building of clerical staff to trawl through the electoral roll and put 2 and 2 together - not even rocket science.

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Mez5 said on 15 February 2014

In the early hours of Monday 10 February a Government minister (didn't catch his name) when interviewed on Radio 5 Live admitted that this information will probably be 'shared'/sold on to drug companies and insurance companies.

The view was put that insurance companies acting for employers might well give those employers information they have obtained on specific employees...

Think about it.

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burnleyite said on 15 February 2014

I have contacted the Labour party regarding this disgraceful invasion of privacy. I too received the information along with junk mail for a pizza delivery service, luckily part of the NHS document was sticking out and so I read it. I have asked many people if they received notification and the reply was - NO. I contacted my GP and was told they had no information on how to stop my details being used by commercial firms but 'would look into how I could keep my details confidential to the NHS only'. I am still waiting for a reply. How dare my details be given to commercial firms without my consent. I thought inertia selling was banned, but in this case not so. Besides which who approves the researchers named in the leaflet, obviously a rhetorical question because it is the firms who employ them!

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MossPrincess said on 15 February 2014

Does anyone know whether data from deceased relatives will be used? Also the leaflet that I received from my surgery talks about family history being shared BUT what right do I as an individual family member have to give permission to share such information. I wouldn't like to go ahead without the consent of all family members and wouldn't be likely to get it.

I just don't trust these systems generally. How many such systems have been hacked into and personal details taken. I agree with comments posted - What access will private companies get? Many years ago I had a brush with cancer and within a short time was inundated with requests for me to become a fund raiser for various cancer organizations. How did they know? It just could not have been a coincident.

While I am all for improvement in services, using this method is far too open to abuse for my liking.

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PapaDelta said on 15 February 2014

The leaflet about the changes to how personal data is going to be used was delivered by Royal Mail along with a whole pile of other junk mail, which normally goes straight into the recycle bin in our house.

The NHS leaflet arrived inside a Pizza Hut promotional leaflet. I only found it because I was looking for something else.

Whoever made the decision to have the leaflet delivered in this manner just wasted a hugeamount of tax-payers' money. That has to be one of the most ineffective ways of communicating these important changes.

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totomit said on 14 February 2014

Can it really be true that HSCIC has appointed ATOS to manage the care.data system ??? How reassuring is that???

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deadi said on 14 February 2014

As far as I can determine once your data has reached HSCIC, it is too late to prevent further dissemination in the future. As has been previously mentioned there are no safeguards to stop this data being used for commercial purposes. In fact the possibility of such is specifically mentioned on page 17 of http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pdf.

Why did the legislation for this measure deliberately opt out of the Data Protection Act?

Why are the HSCIC giving the data to ATOS to process (this is the private company that made such a mess of the "ability to work" assessments)?

The past Chief Executive (Tim Straughan)
of HSCIC was paid £450,000-475,000 in 20012/13 according to the annual accounts (http://www.official-documents.gov.uk/document/hc1314/hc03/0302/0302.pdf), although it did include a hefty £330.000 "termination payment". of taxpayers money after just a few years' work. Nice work if you can get it.

Questions already raised by others:

How do newborns opt out?

How do children opt out?

How do the mentally disabled opt out?

What if my partner and I can't agree as to whether our children should be opted in or out?

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John80 said on 13 February 2014

I think it is good for medical data to be shared, and hence accessible, throughout the NHS. BUT I am not happy with any prospect that this information be shared with any commercial organisation. As I appreciate it, the amount of detail included within one's personal records would easily allow direct identification of individuals. Allowing such full personal information to go outside the NHS will enable commercial organisations to target individuals. It may take time for the risks to become appreciated but information will gradually migrate outwards into possibly unscrupulous hands. It is even a problem with people brought into the NHS part time, as technical specialists or leaving the NHS. The data needs to be reliably made anonymous and non-attributable except by staff directly involved in the provision of current treatment.

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BIGD2050 said on 13 February 2014

This needs to be an "opt in" system for the simple reason that those choosing to "opt out" (very likely to be a substantial minority through lack of information, or apathy) could be targeted by interested organisations for the very fact they have chosen not to participate.

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stasi_ss said on 13 February 2014

Yet another Government designed IT "project" that doesn't respect data protection, doesn't inform people adequately, and doesn't guarantee security of data.

Using end-to-end encryption on this project ? No

Were people informed of this care.data "system" and how they can opt out? No. I know of nobody who actually received this "leaflet". How can people make an educated choice if you don't inform them.

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User844912 said on 12 February 2014

The care.data/HSCIC health record data extract seems to drive a coach and horses through the Data Protection Act and the Human Rights laws.

Once this data is sent I not longer have any control over how my personal data is used, or who will have access to it.

The urge for the NHS/Government to make huge amounts of money from my data, the potential for mis-use and the high risk of it being "lost" far far outweighs any of the claimed benefits it might have for me.

I will be opting out, in writing, and will be actively urging my family to do the same.

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DR G said on 12 February 2014

I think it is appalling that the initiative has been set up with the default position being everyone is considered to have opted in when there is no standardised opt-out form that is sent to GPs or available to download from this website.

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User844432 said on 11 February 2014

Will amber or red data be sent, sold, processed or used outside the UK?

If such data is sent outside the UK how will any UK regulations or rules be enforcible in law?

Any contract would be with the company concerned. What happens to the IT equipment when a company goes bust. When there is a leak how can you tell which company is to blame?

Banks try to keep sensitive data confidential and sometimes fail (Barclays) even though their data is handled by a much more limited set of users. The benefits of this scheme rely on sharing the data 'with confidentiality agreements' with many different customers. The privacy of our data appears to rely on each of these companies and organisations in many different countries all maintaining better data security than a Bank.

All those who are convinced opt in and all those who are not....

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hateoHo said on 10 February 2014

The family court could potentially request access to this information in prosecutions. This 'closed' court could potentially use health and other social service data to support a prosecution without the owners knowledge / consent and the correspnding opportunity to make the counter arguement! This court has acknowledged miscarriges of justice - the problem of which is that the court decision, such as forced adoption of children, is irreversibe.

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bouncinggal said on 10 February 2014

The Data Protection Act protects any information shared about an individual that can be identified as beloning to that person (e.g. NHS no.). If the original purpose for which that information is held changes, surely it would be more correct to ask who wants to opt in, or at least publicise this in a better way than hearsay on social media.

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ts0mev said on 08 February 2014

Will the unidentifiable medical data be sold or provided outside of the UK, i.e. to other countries, such as India to develop a health services and medical research industry there?

The use of such data has enormous commercial benefit in the development of such services and could make the UK a leader or could be simply sold off to a country that specialises in outsourcing.

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ts0mev said on 08 February 2014

Regarding sharing my medical data with the HSCIC, it is mentioned that this may be shared with organisations outside the NHS. When considering data that can identify me:
Does this include commercial organisations?
Does this include insurance companies?
Does this include anyone assessing my fitness to work?

Thanks

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mar7134 said on 07 February 2014

See also Jonathan Freedland's article in "The Guardian" Saturday, 1st. Januari

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DougChandler said on 07 February 2014

I am disgusted with the uninformative and misleading letter that I received which after reading I felt reassured that everything would be safe, but when reading more information on http://medconfidential.org/ and finding the price list for purchasers to access this data including personal confidential information http://freepdfhosting.com/1ec8117040.pdf I am appalled.
How many other people trusted what was said in the leaflet rather than the truth? I believe the public has been duped into consent through misleading information.
I will be opting out.

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kuepper said on 06 February 2014

I'm really concerned I've just found out about this, I've not had a leaflet should I have had one by now? what is the deadline for opting out?

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Fy Fan said on 06 February 2014

I used to work in an information department of the NHS. There were constant breaches of the Data Protection Act with surgeons sending patient level data to their hotmail accounts, infomation kept on file in insecure spreadsheets for many years, patient identifiable data used where none was necessary etc. I reported it to senior management and was told to shut up and was bullied out of the NHS. I do not trust any of the measures this new, appalling system is suggesting to protect patient data. There is no-one who will or will be able to check. Senior mangers have it sewn up. Opt out now.

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Rinaldo1 said on 06 February 2014

For some reason my posting was deleted. Here it is again...

There is a branch of computer science called re-identification which specializes in identifying individuals from data sets that have been supposedly anonymized. It's surprisingly easy. A google search will show how successful this can be.

Lets say there is a well known celebrity who is known to have a particular medical condition and say 2 skiing accidents and a car accident at particular dates. It's easy to find this person in the anonymized data set. Once you have found then you can see their medical history including say a teenage abortion or ongoing mental health problems. Of course is need not be a celebrity, it could be you or me.

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robtosh said on 05 February 2014

The information being provided here in support of this project, and the levels of protection suggested within it, are miserably inadequate. I deal with sensitive personal and corporate financial information on a daily basis and am subject to stringent, law-based and regulatory controls, at national and European level. Failure to meet those controls could, and would, result in draconian sanctions on me and my employee, up to and including unlimited fines and imprisonment. Nowhere, that I have been able to identify, can I see any codified rules or restrictions on who can or cannot have access to my intimate personal data (which if revealed may or may not have a profound impact on my ability to source, for exmaple financial services), or the sanctions that would be imposed were anyone to be found in breach of them. Given the granularity of the data that will be made available, any claims as to my anonymity being protected are risible. It would be a matter of seconds to match this data against other publically available databases (the Electoral Roll, for example) to identify who I am. The arrogance of Whitehall knows no bounds when it comes to seeking to limit the hard won rights and freedoms of the general public. It was ever thus, but this pernicious attack must be repulsed. Opt out today!

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cynic47 said on 05 February 2014

I've battled through the document below:
http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pd
It's an opaque, worrying shambles: neologisms like "pseudonimised" fail to inspire confidence!
We're told the Healthcare England are now expressing concern: shrugged off by the NHS.
It's all still TOO WOOLLY!
They need to think again and at least postpone this.
G.P. Surgeries are no doubt being snowed under with opt out queries as I write...

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countdowncomplete said on 05 February 2014

whats wrong with the government plans?
* automatic op in
* NOT anonymised data - why NHS No.?..why precise date of birth?...why precise post code?
* possibly sharing of data with insurance companies
* sharing of data with OUR privatised health service ie Virgin Healthcare.
So data is secure is it?...tell that to my partner who is still receiving telephone calls from people with a foreign accent asking for her last 3 digits of her credit card 5 years...yes FIVE years after the DWP lost her data.
Its a disgrace and only makes you wonder which of this present brigade of leaders stands to gain out of this!!

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big_brother_is_watching said on 05 February 2014

medconfidential.org/how-to-opt-out

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r1b1c7 said on 04 February 2014

W have heard the word pseudonymised bandied about. Tjis suggests there will be some identifiable info passed, potentially to private companies. This site does not discuss this. Indeed the tone here I "Trust me I'm a doctor". Unless this is explained I am going to opt out. don't want to because I would like to assist research but much of industry is dishonest and will certainly abuse data if it can. Also what happens wen Serco and G4S take over the NHS

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richardlconway said on 04 February 2014

Shameful. The only word to describe this arrogant abuse of people's personal information.

Once the information has been collected, there is no way it can be removed from your database. I suggest you commission a decent company to rewrite the code so that this very basic of essential functions is available!

And the person that insists that the information is not identifiable should go back to school. Sheesh.

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Mr Right said on 04 February 2014

The leaflet says, 'If you are happy for your information to be shared you do not need to do anything... And you can change your mind at any time."

If you change your mind AFTER your data has been shared what happens? how can they unshare it? presumably you just become unhappy with it being shared...

It also says nothing about potential sharing with private companies, or what redress will be available if security is breached; for example, if an insurance company gains access to your data and NHS number.

Remember, while humans operate the system, security can always be breached.

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throwawayaccount said on 04 February 2014

I'm not currently registered with a GP Practice, though I have an NHS number and am ordinarily resident in the UK. How can I object to your sharing of my personal information? I am concerned that even anonymised information could be combined with other information that's easily available to de-anonymise and identify me.

I'm also concerned that other moves that are planned for the future will further erode patient confidentiality beyond what has already been published.

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No Democracy said on 04 February 2014

The default should be we are all opted-out unless we as individuals signup in writing to anything, it is shocking how they are allowed to opt us all in and then sneak this in without the majority of people effected knowing. 1984 is here already, wake up please everyone.

We will have to go thought this process each time the government changes tactics, so maybe next time we won't be quick enough to say no and all our information / data is just taken.

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User841511 said on 04 February 2014

More data is lost by the NHS than all other sources put together, so says the Office of the Information Commissioner. http://ico.org.uk/enforcement/trends

Just look down the list until you see the 'big' numbers... Hundreds of breaches are recorded.

I have zero trust in the NHS looking after information
- so should you.

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Transparency needed said on 04 February 2014

I would like to know if NHS England or the HSCIC are going to publish the names of the researchers,commercial companies,etc who apply for access to care data & the details of those to whom it is actually released? It is only fair that the general public should know where this information is going as they have no control over how the data is used once it leaves their GP record. NHS England stress how important it is to obtain & share such care data, so why has there been such little public consultation about such an important issue? Patients cannot be expected to make an informed choice on the basis of the vague information printed in the leaflets so far distributed.

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mar7134 said on 03 February 2014

Useful article by J. Friedlander in "The Guardian" of saturday 1st. Feb.

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Shedman said on 03 February 2014

Question for Rachel please.

How does all this fit in with the Dame Fiona Caldicott review: ‘Information: to share or not to share’.

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Jules2842 said on 01 February 2014

More precisely, could we have a simple yes or no answer to the following:
(a) does the 2012 Act override the Data Protection Act in relation to NHS patient data in any way?
(b) does the 'Information Centre' have the same obligation of confidentiality towards the NHS patients that their GPs do?
( c) is there any legal constraint of confidentiality placed on the Information Centre by law rather than by the 'intentions' of the government or the NHS?
(d) is the Information Centre subject to any constraint by the NHS (or is it an independent body corporate)?
(e) does the Information Centre require any consideration from commercial bodies accessing its database beyond a simple, fixed price, access charge?
(f) does the 2012 Act remove from the Secretary of State for Health the obligation to provide a universal access National Health Service (an obligation in place from the first days in the late 1940s)?
(g) in what manner are GPs required to forward confidential patient data to the Information Centre, given that they are not employees and that they are bound by professional rules to respect patient data confidentiality?

Best regards

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flaneuse said on 01 February 2014

I can understand why, if the data are to be used in research, they need such paramters as gender, ethnicity, d.o.b. and even where you live (given geographical health inequalities). I would have no objection to such information about me, along with my medical records, being used for publicly-funded medical research.

However, the use of the cuddly weasel words "sharing", and "care" along with the mode of delivery as junk mail, are misleading, and I have no doubt that this craven government will allow the rump of the NHS to sell data to Big Pharma and the insurance companies and other business interests.

It is scandalous that the debate on this has been so muted in the media.

I shall opt out.

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Jules2842 said on 01 February 2014

Dear Rachel

A simple question - does opting out have any LEGAL effect?

Is not the Information Centre entitled to collect ALL GP data?

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NoNoNo said on 31 January 2014

My medical records - and those of my children - are my property. Neither the government nor the NHS has the right to sell it either for profit or for the advantage of private companies, business interests or political advantage.
The opt-out policy is a disgrace and the public debate non-existent. We have not received the leaflet at all, and if as described by others here, it is a scandal.

I despair at the British people's willingness to abandon privacy, security and confidentiality, to politicians and their cronies, who even if well-intentioned at present will sooner or later be replaced by others with more sinister motives.

Will the opt-out policy on organ donation soon be used to "improve the quality of NHS health care" by creating a market in 'donated' organs, and if so, how will hospitals handle the potential conflict between expensive treatments of near-fatalities and the potential gains?

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Tlyn said on 31 January 2014

Just received a copy of 'Better information means better care' as a leaflet dropped through the letterbox among other leaflets selling products and local services. I nearly threw it away with all the other junk.
It is sad that such important information is distributed like this.
This is so important for everyone to understand what is happening, that it should have been personally addressed to all.

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oldrocker said on 31 January 2014

pleased to see I wasn' the only one to see through the latest con by the Tory government.There is absolutely no doubt that this info will be available to insurance companies and will be used to adjust insurance premiums.Opt out now,all I had to do was visit G.P.surgery tell them and insist on written confirmation.
There is far too much data mining.Have you ever wondered why Tesco,Sainsbury et al offer rewards for having their club cards,think about it then shop at Lidl

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withoutconsent said on 31 January 2014

The whole exercise is nothing more than this government selling off things which it does not own.
The data is useless if it does not have your medical number, date of birth and full postcode. All that anyone needs to do is run this through the freely available electoral role which includes your date of birth and bingo. You re exactly identified.
Without this information, the data is commercially useless. Expect your sons and daughter to be penalised for insurance products any time soon if you are unfortunate to have illness running though family such as prostate or breast cancer for instance.
Never going to happen? Just see which tory politician have links to insurance companies and private health care organisations.
Contact your mp now to try and get this stopped. We are all sleepwalking into this.

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Lachina said on 31 January 2014

Is https://systmonline.tpp-uk.com part of this sharing? Is this the data base information will be shared from?

My GP practice has informed me, I will no longer receive 'repeat prescriptions' unless I am registered to this facility. This is the only way I am able to order my monthly prescription from Feb 4th.


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User840045 said on 30 January 2014

I find it hard to believe that as at 30-Jan-2014 around noon, there are only 92 comments.

The leaflet was pushed through millions of letterboxes, and despite it being hidden within junk mail (and disguised as junk mail by the way it was formatted and the type of paper it was on etc), there would still be millions of people who've seen it.

Given that the leaflet basically says "by default, your entire health history, and everyone else's, will be made available to anyone who we decide to give it to for any reason we want, and here's the website that has more info...." I find it very hard to believe that only 92 people have responded on the site.

Can you (the NHS) please post a reply to this to tell us how many comments have actually been submitted versus how many comments have been moderated as approved/published?

I have absolutely no trust in NHS processes or technical skills. But you might be able to regain some of that trust for some people if you tell us how many people have made a comment, and how many of those comments you've deleted because you don't like what they say about the NHS.

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User840045 said on 30 January 2014

You couldn't have made the leaflet look more like junk mail if you'd tried; I assume that was deliberate so that people wouldn't know about it and therefore wouldn't opt out.

Opt-out should be assumed by default, not opt-in.

The reasons given for the new database are completely bogus because the NHS already has the relevant information held at the relevant levels.

There are only 2 reasons that the NHS are doing this:
1) They're too lazy to go to separate databases for specific research/stats.
2) They want to sell the information to the highest bidder.

Having a single database that holds all health information about everyone in the country is not needed in the first place, and even if it was, the security risks outweigh any potential benefits many times over.

All it would take would be one rogue person in the I.T. department, and then you'd have the entire health history of everyone in the country publicly available.

Maybe we should all just post all our health histories on the public profile on our facebook accounts, because that's the kind of effect that this will have in the end.

The whole idea is completely insane, and the methods you're using to try and stop people from knowing about it (hiding it via junk mail etc) makes it even worse.

Separate databases for separate aspects of life are separate for a reason, if the NHS doesn't understand those reasons and refuses to abide by those reasons, then the NHS has no business holding any of our data, let alone the entire health history of the country in a single database.

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cantacor said on 30 January 2014

I received, and to my surprise, read the document about sharing information. The word sharing crops up regularly but there's no reference to selling. I suspect our data is to be marketed. In addition there's the old adage about accuracy and data bases. "Rubbish in and Rubbish out" So while in principle the sharing of data sounds excellent what will the reality be?

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fmarouet said on 30 January 2014

Daniel Clover, Thank you for that information. I am new to this issue, but what percentage of the population listens to radio 5 or reads the Groniad. Rachel NHS does exist and is senior policy research manager. She previously worked for the BMA.
This is getting exciting.
See: www.ehi.co.uk/news/primary-care/8940/care.data
And: www.england.nhs.uk/wp-content/uploads/2014/01/gp-update-note.pdf

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Eye_See_Dee_10 said on 29 January 2014

The Radio5Live link was hard to find. Starts @ 17:37 http://www.bbc.co.uk/iplayer/episode/b03s68b1/Shelagh_Fogarty_28_01_2014/

I’ve also waded through several other links quoted in this thread.

What is becoming clear is that the full data set is apparently already being sent from the GP practice in its entirety to the “safe haven”, and the red data is not being held back at GP practice level.

The opt out requires the GP practice to add “dissent” codes to the patients data set. It would appear that it is therefore the “safe haven” where the real control is held.

Please correct me if I have got any of the above wrong.

In an environment where the legality of the collection and merging of all sorts of electronic data capture is being called into question and challenged I have real concerns.

The argument that this data grab will improve research into cancer is misleading. Trained staff have been accessing raw data from patients’ hospital notes for years. I’m not referring to the clinical codes captured for HES by the hospital coders, but the detailed reports summarised by visiting trained researchers from the Cancer Intelligence Units doing their regular rounds and follow-ups. It is a much richer source of relevant information than any electronic system will ever achieve from data sets. Moreover it is collected in a more secure environment.

This whole scheme should have been openly debated. In case I missed it, when was the public consultation on this leading up to implementation?

Not at all reassured, and very unhappy.

The gatekeepers of our identifiable data, whether we opt out or not, must be the GPs who I trust, and who I can change if I don’t. I want none of my identifiable data held elsewhere.

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OPT ME OUT said on 29 January 2014

A leaflet was pushed through the door the other day with the rest of the pizza, curry and loft insulation bumf that almost ended up in the bin until I noticed the NHS logo. On reading it, it states the NHS’s intention to “share” (they mean sell) all our medical details, and I quote, “with those who plan health and social care services, as well as with approved researchers and organisations outside the NHS”.
Spot it? “Organisations outside the NHS”. Which means the NHS want sell your intimate medical details to anybody with the money to buy, insurance company’s, employers, market researchers etc etc. But they aren’t asking for your permission, oh no, they’re going to do it anyway unless you go down to your doctors, you get a form, you fill it in, and you return it.
I’ve just got one of those forms for my practice, and just to make things even more awkward the grammar of the questions is awful.
For example; “I do not want my personal confidential data to leave the GP practise…Yes/No”
So what do you answer to that, anyone?

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Wiltshire hack said on 29 January 2014

This system, and the approach to persuading patients of its alleged benefits, are almost certainly illegal under EU and UK law. The ICO has already logged serious concerns. Sending out something that looks like junk mail just will not do. There is no information on how to opt out, or even an opt out form. We know that GP surgeries are careless with data, and have not done well with summary care records. We also know that 40% of GPs are opting out of care data (Daily Telegraph report).

The NHS needs to think again on who owns medical data (we the patients do) and the circumstances under which it can be used other than for the care of the individual. The only rational course for any individual is to opt out, as the list of purported benefits is largely illusory.

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Susieballerina said on 29 January 2014

will be opting out - when time permits me to get to the GP - usually have to wait over a week for an appointment anyway! I disagree with "opt-in" by default. I agree with an earlier comment that two leaflets were put through my door with junk mail and I nearly missed reading it A waste of NHS money in my opinion- most people will have binned the leaflet and that I probably the idea.

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e_it_arch said on 29 January 2014

I'm in the IT industry and first heard about this by accident when looking into some related technology subject matter. I decided then that I would opt-out of this scheme, but got distracted and did not actually do it at the time. Only this week have we received the leaflet (as previous posters have mentioned) amongst various commercial advertising junkmail and I nearly missed it/binned it. I'm glad to have had the opportunity to re-review the subject as I share the concerns raised and I will now be opting out. Why? 1) I'm concerned with the technology - as I have seen "mistakes" where confidential data has accidentally leaked. Once it is out there, it is all but impossible to get back. 2) I object in principle that opt-in is assumed by default.

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Daniel Clover said on 29 January 2014

fmarouet - there's no need to get personal. Rachel Merrett has been giving, what I think, is useful information.

Just because you haven't seen an article in a newspaper it doesn't mean there haven't been any. It was on the front page of the Guardian last week and articles have appeared on multiple news websites. Additionally, there have been numerous radio interviews and TV interviews.

If you want proof of Rachel's existence then listen to the radio 5 Live broadcast from 28th Jan @ 12.

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immobilejim said on 29 January 2014

I should just like to add my unease about this system which is being shoe-horned in under the 'opt-out' ruse.
Why no specific 'opt-out' form ? How can we be assured that our doctor's staff will actually update our records if we say 'no'
As a Scot who has lived and worked in England for the past 50 years, the most likely scenario for me falling ill away from home would be for it to occur in Scotland. What use are NHS England's records in this situation ?
Despite NHS using all dodges possible to make opt-outs as difficult as possible, I will be declining to share my records as I did last time.
P.S. In order to 'register' to be able to send this comment, I note that under terms and conditions 'we will not share this information without your permission'. Pity they didn't apply these principles to the sharing of information proposed.

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dojo99 said on 28 January 2014

Automatically opting us all in? Surely this whole scheme represents a breach of the Data Protection Act 1998, this doesn't fit under secondary use. Also how can you be sure of the 'security' of the purchases of our info if you don't audit them?! Shocking.

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nowayjose said on 28 January 2014

Why haven't the got an opt out available online. Maybe 'cos too many people would opt out.
I don't agree with being auto enrolled so I'm opting out

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libbysaunders said on 28 January 2014

A few years ago I went through hoops to stop my medical information being seen generally and for me to access what my GP had written in my records. I cant remember what the scheme was called now. To do this I had to attend an interview from NHS at my GP Surgery and attend another interview at a local supermarket a couple of miles away. Goodness knows how much money that all cost to set up and what has happened to it? - its been abandoned that's what has happened to it. Why ever would I trust the NHS with this latest scheme. I feel sorry for my GP Surgery having to deal with all the people going in to log their objections to this plan.

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AbsolutelyNot said on 28 January 2014

You should have a better system to prove to us that data will not be used without our consent, and will not be sold on to data mining concerns.

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AbsolutelyNot said on 28 January 2014

The NHS has a new database - why do those words fill me with dread and uncertainty?

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User839274 said on 28 January 2014

If you’ve never been sick, you’ve nothing to fear….

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User839274 said on 28 January 2014

Sorry, but not good enough. I'll be opting out simply because you are automatically opting me in.

How do newborns opt out?

How do children opt out?

How do the mentally disabled opt out?

What if my partner and I can't agree as to whether our children should be opted in or out?

In out in out shake it all about?

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Batauri said on 28 January 2014

It is not clear from the leaflet:

a) if there is a time limit for opting out? There is a statement on this web page 'Information from GP practices will begin to be extracted and sent to the HSCIC in the spring 2014' which does not give much time for people to learn more about the implications of this and opt out;

b) if one does not opt out, whether one can do so at a later date. Earlier reports on this initiative indicated that it would not be possible to opt out later.

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enternamehere said on 28 January 2014

It really winds me up how many scaremongerers there are out there who believe everything that happens is to their detriment. While I'm not saying there are no ulterior motives behind these data sharing movements (I don't know if there is or not), why can nobody consider the potential, and I do believe, intended, benefits of such systems.

Worse still are those individuals here blaming their GP's, I promise you, most of them won't even know what care.data is if you asked them. It's something which has been created from the powers that be at the top end of the hierarchy, not by the minions in primary care, that's just laughable! It also just highlights how little some of you know regarding the subject you're marking such harsh and pious judgements about.

Re care.date, being an adminsitrative minion in primary care I only know as much as the rest of you (possibly less as I've yet to receive a copy of the leaflet being mailed nationwide). However, I do believe that there are potential benefits to data sharing in general, as long as it's used by the right people for the right reasons.

E.g. Someone else here has referenced Summary Care Records. Our local hospitals have found the information on SCR's invaluable in terms of ensuring they have the correct information on the patients they are treating. Just 1 example of many, is that many patients attend A&E depts with old or incorrect medication (if any at all) so the SCR helps to enable the clinician to have confidence in the knowledge of what they are actually being prescribed and also know what allergies the patient has documented. They also are not permitted to look at SCR without explicit consent from the patient!

Lastly, and this is a purely personal statement; I don't understand what people are scared of sharing, I for one don't have anything to hide, but if the information about me, combined with that of 1000's of others, helps improve any element of NHS service then that's great!

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leave me alone said on 28 January 2014

Just phoned the 03004563531 number try and opt out--- was told that it was as simple as phoning my GP - yeah right ! Just phoned my GP and they know nothing about this . Surprised ? Want to opt out!

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Rachel NHSE said on 27 January 2014

In answer to your questions and concerns about privacy, we have just published a document, which describes the steps we are taking to protect your privacy and the controls in place. I hope that this will be helpful to you in making an informed choice.

It is called a Privacy Impact Assessment and is available here:

http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pdf

Of course, if you still wish to object, just let your GP practice know. Alternatively if you have further question don't forget you can call the patient information line 0300 456 3531

Regards
Rachel Merrett (NHS England)

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User342249 said on 27 January 2014

Well, that's sensible - "speak to your GP practice". I'll look forward to 18,000 calls and extended queues at the front desk. Would it not have been better to have an opt-out form as part of the leaflet?

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cynic47 said on 27 January 2014

1. Why did I have to jump through so many hoops, creating an account just to leave a comment??
2. It's totally unfair to put the onus on us to opt out, but no doubt this is the idea, so that many don't bother.
3. Who will actually be receiving patient information is a mystery! Both leaflet and website offer no help in this respect. Consequently we are being asked to sign up to a totally unknown set up. It's a mess!

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toffeetoffee said on 25 January 2014

Dear Timothy
Re health record sharing
Sorry to be a pain but could we register for our details not to be shared.
It’ our little kick against the Big Brother mentality. We object to the data being sold (even with safeguards) and feel collecting this “big data” detracts from the essence of confidentiality in day to day interaction between doctor and patient. It is the thin edge of wedge and neither of us believe the promised benefits are sufficient to trump the essential issue of patient confidentiality.
Again many apologies if this is difficult to do.
Yours sincerely

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myexperience said on 25 January 2014

I cant see why the government is asking us to trust medical staff with sharing data when there is no requirement for those staff to be truthful, open and honest with patients.

Too many people suffer NHS negligences which are strenuously denied against all the evidence; and still there is no accountable and honest method of redress. The patient is always wrong and has to live with the outcome.

The expensively circulated leaflet is too vague and is not clear on where our information will end up and who will have access.

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wildthing666 said on 25 January 2014

I found out bout this about a week ago through a disability forum. As I have to have an annual review with my GP I am going to tell them I don't want to opt in to this, and that only people directly responsible for my care will have access to my records and ATOS or 3rd party's claiming to be DWP should not be given my medical info.

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Eye_See_Dee_10 said on 24 January 2014

Do not let it happen. By the time it gets to the inevitable legal challenges/actions and Parliamentary Select Committees, after the event, it will all be too late.

A Parliamentary early day motion has been tabled. If you have concerns, your MP may support it. To see the motion, cut and paste this link into your browser.

http://www.parliament.uk/edm/2013-14/979

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User838161 said on 24 January 2014

Like many on this page I have grave concerns over the NHS ability to maintain confidentiality and security of my information.

It is very noticeable that the NHS is very reluctant to have us opting out, little information is provided anywhere on how to achieve it, and several informative post have now strangely vanished.

Working in IT I can concur with Keith78's comment of 20th of January that no networked system can be regarded as secure, and having worked on some of the NHS systems I will most definitely be opting out.


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fredforever said on 24 January 2014

This initiative is poorly thought through and poorly communicated. I will be telling my GP practice to keep my information confidential. I might consider changing my mind when the NHS lets me see my own records.

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Believer in privacy said on 24 January 2014

I strongly object to I strongly object to the Government proposing to breach my
privacy in this way, to bodies which will be able to use it
for commercial gain and to identify me very easily by
linking my medical data to other data that is publicly
available or on sale.

I also object to the way in which they are making it hard for people to opt out - why is there no form for people to fill in and have forwarded to their own medical practice. In the case of my own medical practice, I even had to telephone them to find an e-mail address to contact - there is none on their website. This is simple trickery to reduce the numbers opting out of what is clearly a highly intrusive and unpopular scheme

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Harriete said on 24 January 2014

Different parts of the NHS are currently been sold off on a massive scale to private companies. Will information be shared with those companies?

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maddingcrowd said on 24 January 2014

This scheme is clearly not popular..
There has been no proper public consultation and therefore no public approval.
In the NHS communications on this issue there are no contra-indications as one would expect on the most basic medicine info sheet .
There is no mention that the contract for the scheme is to foreign private company with a poor track record of service delivery.
There are no forms provided for opt out.
Those who wish to introduce this scheme clearly have no interest in public opinion, or public endorsement.
The dangers of data sharing have been totally disregarded, they have always been significant, but in the computer age they are massively more significant.
Which Norwegian Jew in 1930 could have imagined that the census information they provided to a democratic government in Norway would lead take them to Auschwitz? and so with census information from all over occupied Europe
We cannot see how data will be used in the future so we need to be doubly certain we are putting in the appropriate checks and balances and Care data does not even begin to address this - time for a total rethink

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Hermes418 said on 24 January 2014

At the risk of being thought a conspiracy theorist, I just wonder if our information will be used to weed out the weak from the strong and those who are older will not get the treatment they need. Only today on the news a report said that cancer patients over the age of 65 were not getting proper treatment due to their age. My mother died in hospital at the age of 82 after suffering a stroke. Up until then she was living independently, did her own shopping and housework, took a daily walk and thoroughly enjoyed life. She had type 2 diabetes, cholesterol problems and angina. All of which were medicated and did not give her any trouble. After she died a nurse told me "Well, her quality of life wasn't very good was it?" She had made a judgement that was totally wrong. My mother did not die of the stroke she choked on the feeding tube that was being used to feed her! That's my reason for not liking the idea of shared information, we just don't know what the NHS/Government will do with it.

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MSanderson said on 24 January 2014

Only those people who are discerning enough to read and examine the leaflet are going to raise the important issues. We probably have no alternative but to make a loose judgement on what value will be obtained from releasing our details and what damage we may incur by releasing it. On balance, if there is a remote chance of there being a benefit to me or anyone else I will accept releasing my information. I will probably never know the resulting benefit! However, it has been evident to me that since around 1962 'Privacy' was on the way out. Number crunching has been a great boon in some respects but it is like the tide, you can't hold it back and as it probably won't stop. Along with CCTV there is probably no longer anywhere to hide.

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Eye_See_Dee_10 said on 23 January 2014

The whole scheme is appalling.

This care.data scheme is easily confused with the NHS Summary Care Record, so some citizens may already think they opted out last year.

This is no longer about direct health carers having access to relevant medical records. It’s about disclosing private and personal information to unidentified third parties.

With the timing closely following the introduction of the NHS SCR it has all of the hallmarks of an attempt to quietly acquire the “right” to gather the private medical data about the majority of the British public without them realising. The lack of any easy method of notifying the GP practice, (there is no opt-out pro-forma), makes it still more suspicious that this is a crafty way of maximising the number of those whose data will be harvested either without their knowledge, or through inertia. The potential for profiling by combining these data with other government databases is truly scary!

I shall complete my separately sourced “opt-out” application form. Whether or not my information will be withheld is anyone’s guess. I'm not confident that it will be, but it’s the only hope I've got that my information might remain private between myself and my GP practice staff- unless we can get this scheme immediately shelved.

There are many aspects of my personal medical history which I would not have shared with my GP had I known that it would eventually be made available, potentially globally, to third parties.

Am I alone in now feeling intimidated? Unless this scheme is scrapped, I shall be very economical over what I divulge to my GP from now on. In future I will carefully consider what I choose to disclose if it cannot be kept securely within the confines of the GP practice. I no longer feel that I can have an open, but private conversation with my GP, either about my own medical needs or those of my family.

NHS and other involved government parties - you should be ashamed.

Please stop this scheme now

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Cathy69 said on 23 January 2014

I received the leaflet with a pile of junk mail and after reading it I find I am not much wiser. The grammar jumps from we will to we are in the same paragraph and I found the information very clear.
While it would be a great step forward to link all NHS records across the UK I feel that we are a very long way from this. Departments in my local hospital seem to be unable to communicate to GP's and patients, the amount of mistakes and duplication is very disconcerting so I hold out very little hope of the wider NHS being able to cope.
The security of the information collected is also worrying just who will have access and for what purpose? Will we be bombarded with more junk mail and telephone requests if the data is sold ?

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Keith78 said on 23 January 2014

Oh and by the way, what happened to that very infomative post by Liam?? (I think) that was deleted? It would have been helpful to many of the people who have expressed their concerns here.

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Keith78 said on 23 January 2014

Dear Rachel (NHS England),

Sorry I got ypur job title wrong, but it really makes little difference to the points I was making.

The reason that it is important to know the name of this data-grabbing scheme is so that patients have something to call it when opting out at their GP's. Being unaware of even the name of this scheme might make some patients feel they don't know exactly what they are talking about and, therefore, less able to express their concerns. But I'm sure you and your colleages already realise that.

Thank you for providing the links for the dissent codes. Why wasn't this information included in the leaflet sent out with my bulk junk mail delivery, I wonder. Presumably to put another obstacle in the way of dissenters.

You may be right that no incidents of data loss or theft from the HSCIC database have so far been made public. But does that really mean they haven't happened?

But in a way that misses the point. After the upload of GP data occurs, the un-anonymised patient data will be released to numerous other bodies and private companies, thus greatly increasing the scope for loss or theft. That is the real worry.

I suspect that many people will also feel uneasy that their most intimate, sensitive and valuable data is being used to contribute to the profits of private companies, some of which I understand have links to certain MPs.

The apparently underhand way that this is being handled only tends to make one even more suspicious of the Government's and NHS's motives.

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regomcr said on 22 January 2014

While I may be willing to share all my data for the purposes of improving health for the world at large, I find the language used vague -most probably- on purpose.

There is no guarantee that my data will be used ethically, All it says is that there are "strict rules to protect" privacy.

I want strict rules to protect my data from being used in research relatng to the creation, marketing or deployment of weapons; I want my data to be protected from being sold to or shared wit companies which engage in the patenting of genome products; I want my data to be protected from being sold to or shared with companies that engage in abusive hiring practices here and abroad; I want my data to be protected from being sold or shared with companies or inividuals that treat the environment with contempt; I want my data to be protected from being sold to or shared with companies that have unacceptable top executive salaries; and this is just a sample.

I want the data to be supervised by an independent forum of individuals whose remit is to follow strict published ethical guidelines relating to sharing, selling and profit making by the use of my data.

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jeff100 said on 22 January 2014

I too only found out about this by accident - leaflet delivered with a pile of other junk that usually goes straight in the bin.
'data mining' is becoming very very big business, god alone knows what they really want to do with this data.
apart from that, there is an obvious security issue and why do they want to include your full postcode?
i will be opting out as soon as i can get to my GP.

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Editor NHS Choices said on 22 January 2014

Dear Lenny909,

The comment was escalated to our moderation team and it went through our moderation process. It has now been checked and approved and should shortly reappear on the site.

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Superbladesman said on 22 January 2014

This very disturbing in the manner it is being introduced because if you have not received the leaflet, like me you would never know about it. I only discovered this move from friends who had.
People should have to opt in by default.
Even if you opt out how do you know your wishes have been adhered to has you have no means of checking.
I have a principle "trust but verify" in this case it is not possible.
Furthermore each individual should be given the right to see the information that is to be shared/shared before and after release
Organisations Like the NHS are not to be trusted as guardians of your personal information as history shows
I remember several years ago opting in to a system that would give patients the facility to view their own records online, what happened to this then?

I wouLd recommend that people make their views known to their local MP

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Siz1234 said on 21 January 2014

In principle I I very much support using medical data for research purposes - the potential is enormous.

But this is on the understanding that confidentiality is maintained, and patient data is properly anonymised.

However it is quite clear from the proposals as they currently stand that issues of confidentiality are being given a very low priority (despite the predictable protestations of spokepeople to the contrary).

There is no reason why full postcode and full date of birth need be retained.

I will therefore be opting out and would urge others to do the same in the hope that a relatively low take-up rate will force a debate on these important issues.

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grania said on 21 January 2014

I dont want my information shared. I dont trust the goverment to keep my records safe but i notice there is no information on the hugely expensive propaganda on how to opt out... Typical

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JAD122 said on 21 January 2014

I strongly object to the way patients are actually being informed about this. Today I received the leaflet 'Better information means better care' together with a load of junk mail which I could have easily binned. I suspect many people will not give it a second look. There should have been some personal correspondence from one's GP practice informing patients about this rather than a mailshot. I also object to having to be the one to opt out causing me and my practice hassle. There has to be far more information about the implications of sharing one's medical records and this isn't addressed - what exactly constitutes an 'approved researcher'? We all know that data is never 100% secure either - this is an ill thought out initiative which arouses insecurity and suspicion about how information will be used despite all the reassurances in the leaflet. It should be shelved immediately.

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Private20 said on 21 January 2014

I object strongly to having to opt out of this rather than opt in. Why should I have to go to my GPs surgery and waste not only my time but theirs to protect my privacy. Can you explain why I need to do this and not a load of political waffle please.

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Shedman said on 21 January 2014

I'm currently a patient at four major hospital sites; I have to take responsibility for providing copy information/correspondence because they don't always talk to each other about my care. It's crazy in this day and age of advanced technology.

Notwithstanding, I assume the collection of my personal and confidential data will be from all four hospitals, plus my GP. So there will, at last, be one consolidated record.
Q1 - Will I be able to access that information being held about me?
Q2 - if not, why not?
Q3 - if yes, will I have to pay, and how much?
Q4 - will I be told precisely who will see my confidential records?

The whole subject of patient information is a minefield. Surely, before the NHS goes any further, it should insist that hospital Trusts talk to each other!

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Verite said on 21 January 2014


I, as the patient, cannot access my Medical records and check if they are accurate (and in the past I have discovered many errors).

Can anyone tell me how one can check this information, before I decide to be cautious and opt out?

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Rachel NHSE said on 21 January 2014

Dear Keith78

My job is not PR - I noticed there were some comments and thought it would be helpful if I provided some information to respond - I hope that this has been helpful.

The leaflet covers all uses of your information for purposes beyond your direct care, not just care.data. Care.data does not mean anything to most patients, as it is an internal name for a project to upgrade existing systems. What is important is that you understand the ways information is used for purposes beyond direct care and the choices you have.

Further information about your choices is available in FAQ 8 of the Patient FAQs. In addition the codes used by GPs to record objections are here: http://www.england.nhs.uk/wp-content/uploads/2013/08/cd-guide.pdf

The HSCIC has been collecting data from hospitals for many years and we are unaware of any security breaches. There is further information about how the HSCIC protects information at: http://www.hscic.gov.uk/patientconf

Of course if you have concerns you can simply object by informing your GP practice as described above. You do not need to explain to your GP why - you just let your GP practice know.

Regards
Rachel (NHS England)

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Keith78 said on 21 January 2014

So no answer to my questions from Rachel Merret (NHS England) then. I didn't really expect one: Why give patients the information we need to opt out?

Not to worry though, the info I wanted was provided in a post this morning by Liam?? that, surprise surprise, they have now deleted!

In case its useful to anyone else, he answer to my question is that two codes must be inserted into our records in order to opt out. These are:

Read v2: 9Nu0, or CVT3: XaZ89
and
Read v2: 9Nu4, or CVT3: XaaVL

There are also other "Read codes" codes to prevent uploading of your data to the Summary Care Record and to local shared care record databases. These are, respectively, 9Ndo and 93C1.

For more useful information on this data grab and how to opt out see http://www.care-data.info/.

I wonder how long this post will last.

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TomLTomL said on 20 January 2014

Information on how to opt out here: http://medconfidential.org/how-to-opt-out/

38 degrees petition here: https://you.38degrees.org.uk/petitions/prevent-the-sale-of-nhs-patient-records-to-drug-and-insurance-companies-1

Further information here: http://www.care-data.info/

Epetitions (official govt site) petition here: http://epetitions.direct.gov.uk/petitions/53994

This should be 'opted-out' by default, the opt-in process should be voluntary. Disgusted by the whole thing to be honest.

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LINGA said on 20 January 2014

I have not yet received the leaflet, I will of course be opting out of this. My details are not being taken, they are private and will remain private. Perhaps a form should be available to allow people to opt out if the wish to do so.

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Keith78 said on 20 January 2014

First I have two questions for Rachel Merret (NHS England) or any other available member of their PR staff:

1. What exactly is this new data grab called? Is it "care data"? The leaflet and this web site are both a little vague - I suspect deliberately so. I would like to know so that I can be sure there's no confusion when I object to this at my GP's surgery.

2. Can you also tell me precisely what codes I should ask the practice to insert in my record in order to register my objection to both aspects of this use of my personal information.

Despite all the assurances here and elsewhere about privacy and security, I have absolutely no faith that my data will be secure. There have been numerous recent instances of data loss, hacking and other breaches of supposedly secure government networks (pensions, benefits and records armed-service personnel, for instance). And those are just the mishaps they haven't been able to cover up. I see no reason to believe that this new database will be any more secure.

Having worked in IT for almost 30 years I can tell you categorically that no networked database is totally secure. The best security you can have is to keep all records on good old fashioned paper. It's difficult to access, copy and distribute - the exact opposite of any computerised record. Once your data is networked it can be cross referenced to all your other computerised records with extraordinary ease. That's not good for anyone, except those who wish to profit (either legally or illegally) from the misuse of our personal data. Knowledge is power.

The vagueness of the information provided on this new scheme, its mode of delivery - as a junk mail flyer - the need to actively opt out, and the absence of any official form for doing so is an absolute disgrace. Even the government couldn't be that incompetent by accident. It's deliberate: to deter patients from exercising their troublesome legal rights to object.

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Tom59 said on 19 January 2014

So, I have had a random leaflet stuffed in my letterbox by the post man, telling me that my details are going to be used in a new way by other people that are not directly involved in my healthcare.
Sorry, but you have got this wrong. My details, remain, my details until I tell you otherwise. You can ask me for permission to make this change and I might or might not agree. You cannot, just simply take my details as you like, on the strength of a bit of junk mail. What if the post man forgot to leave me a leaflet? What if I had just binned it with all the other junk that I get? This means that you could be misusing my information without my knowledge or consent.
Why should I have to go out of my way to inform my GP that I don't need this service? You want the details, so you have to do the running I'm afraid.

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Contad said on 17 January 2014

Totally agree with comments that state this should be opt in rather than opt out.
The information on opting out is vague, how can we be certain that opting out information will be added to medical records?

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Rachel NHSE said on 17 January 2014

Hi Opt out

You are right to consider the available information so that you can make an informed choice.

Trained advisors are available to answer any questions - (tel: 0300 456 3531) and the FAQ document linked above might be helpful to you. See FAQ 23 in particular.

The facts are not always reported correctly in the media/blogs. For example we are not selling your confidential medical records for a £1, sexual health or child protection data are not being extracted. FAQ 7 provides information about how information is shared.

Of course, if you still wish to object then let your GP practice know and they can record this in your records.

I hope this information is helpful

Rachel Merrett (NHS England)

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Rachel NHSE said on 17 January 2014

Hi Bossybabe

There has been some confusion over the use of the data. This isn't a money making exercise. It's about making better use of information to improve the health and social care service so we all get the best possible care.

It would be illegal for us to sell your identifiable data. See FAQ 7 for more information about how the HSCIC shares information. While the Health and Social Care Information Centre charges a fee to cover their costs, they do not make profits from providing data to other organisations, nor do they subsidise any applicants to receive it.

I hope this helps
Rachel Merrett (NHS England)

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Bossybabe said on 16 January 2014

Absolutely outrageous that such personal data should be shared in this manner with little or no publicity that you have to OPT OUT if you don't want your data shared.

The last thing I want is private companies, whose business it is most definitely NOT, buying data sets. I guess it's a set up to help the cash-poor NHS.

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Penfold1944 said on 16 January 2014

I have read the 'Better information means better care' leaflet and am more or less happy with the proposal to share information. I am somewhat baffled though that although the NHS can access my patient information and I cannot.

I have access to part of the system through www.patient.co.uk and can ask my doctor for repeat prescriptions but when I try to access my medical information I am passed to another website which eventually asks me for parts of an 8 figure PIN which I have no clue as to what it is. If the site is that secure I wish the NHS the best of luck!

Anyone know how I check what information there is on file? I suspect that some of it is inaccurate.

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Opt out said on 16 January 2014

Just wanted to add i would have considered this long and hard if only the NHS had access to these details as steveB2014 pointed out so rightly.

As soon as you add private companies to the equation it loses its validity.

Theagent i Don,t consider myself a whiner or whinger just someone with my eyes open weighing up, what is a serious issue.
Once its out there on the internet its out there for eternity.
and i don,t think anyone would want there medical records online.
The goverment can,t guarantee the safety of a central database.And you can be assured that it will come under attack by hackers looking to strike gold.

To credit, the information i gave was in part from this article..
http://www.kernelmag.com/features/report/8394/the-companies-paying-to-view-your-medical-records/#



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Opt out said on 16 January 2014

Data harvesting.
Now even at the NHS. How long before the insurance companies put there fingers in the pie too.
Can,t believe people are so knieve. To share there personal data.....The Health and Social Care Information Centre (HSCIC) will mine data that includes identifying information such as birthdate, marital status, postcode and NHS number, along with clinical data, GP referrals and prescriptions. Even sensitive issues such as mental health, sexual health, child protection and counselling will all be included.
Companies will be able to purchase data sets for just £1. In the past two years, a range of researchers and private companies have applied and received sensitive medical information held by the NHS. They include, but are not limited to, Bosch the German home appliance company’s health division, ADL Smartcare – a private company that makes its profit by offering healthcare advice, CHKS ltd – a company that makes money by turning data into ‘achievable information that drives decisions’an online comparison site for private healthcare and Corin Ltd – a joint replacement manufacturer who, unsurprisingly, has interests in health data of a sensitive nature.Understanding Society – a ‘Large Facilities Capital Fund’ run by the Government, applied for the data also. This means that the Department of Work and Pensions – responsible for benefits, the Department of Education, the Department of Culture, Media and Sports, DEFRA, the Department for Transport and the Food Standards Agency will be able to access the information should they seek it. with the promise of a nation-wide data pool, private companies will be queuing to get their hands on medical records.How long before employers take into account your medical records when you apply for a job? Not a week goes by Without Hackers stealing thousands of personal details off of known and trusted companies with supposedly state of the art security.
Count me out.....

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SteveB2014 said on 15 January 2014

Fundamentally, striving for a joined-up healthcare system in the UK has to be commended. Whether it is my GP, dentist, hospital, or otherwise, I'd like to think that they are using identical healthcare history and thereby giving me appropriate treatment.

However, the main concern with this system (eloquently echoed by many who have left comments on this site) has to be access to our data by "researchers". There are two breeds of such people. Those that are working towards improving systems within the NHS to improve how our healthcare is delivered (i.e. efficiencies and efficacy). But there are those (e.g. multinational drug companies) who wish to us our personal data for profit.

I am uncomfortable with choosing to opt-out to stop drug companies and others gaining financially from using my data and at the same time losing the benefits of a joined up NHS. We should not be put in this position by the bureaucrats who are managing this scheme.

One final barrage of whinges: (a) why are these comments only being reviewed on the 2nd Jan 2015, (b) what is the process for review, (c) will any notice whatsoever be made to theses comments and (d) how would we, the general public, even know?

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jessi777 said on 15 January 2014

Picking up your opt in comments:
To quote Rachel..NHS

The Health and Social Care Act 2012 empowers the Health and Social Care Information Centre (HSCIC) to require health and social care organisations to send it personal confidential data in limited circumstances without seeking your consent.

Responding to this ... how did this law get passed without asking us..
Yes i am sure we can all see it is valuable and helpful to the NHS and im sure many would help and say yes if given the opportunity to actually opt in ; but you missing the point we were never asked, if we were im sure many of us would help it is our privacy our data , I would not expect the bank to share my account information out without seeking my permission. I have been met with gasps of shock when I mentioned it in my workplace , one said it spoke of communism . We all have the right to privacy and it is only decent to ask it speaks of total disregard .
There is still no definite procedure mentioned in the leaflet, 7 out of 10 threw it away with junk mail. A lot of elderly are totally confused at the vague leaflet. It will be interesting to see my Mps reaction

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SuffolkPatient said on 15 January 2014

The leaflet delivered to households says information will be made available to "those planning NHS services and approved researchers" - possibly outside the NHS?
There is no information anywhere that I can find that elaborates on what/who an "approved researcher" might be.

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Thegent said on 15 January 2014

Hi, I have several medical conditions, including MS, so I have received treatment from a variety of sources over the years.

I think that this plan is brilliant and long overdue!

The whiners and wingers who feel their 'privacy' is somehow threatened must be made to understand that these records are currently held in vast paper files, spread over large areas: surely this is far less secure.

My only query is whether or not the patient will ever be able to access their own records on-line? This would also benefit the records as we could check for any errors and, presumably, get them corrected.

Please respond. Thanks.

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Moon Shadow said on 15 January 2014

I moved house 15 months ago. Does this mean that my information and treatment from my last surgery will be on my records too (it currently isn't). Also how far back will the records go? Thank you for your time.

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adihn said on 14 January 2014

This NHS datacare leaflet was dropped through my door with a take-away promotional leaflet so I nearly threw them both away by mistake. Perhaps that is exactly what the NHS hopes will happen. It is wrong to expect people to opt out rather than opt in. I have already filled in the relevant form stating that I do not wish my information to be shared but now I am have to visit my GP to inform them again. Even so there is no guarantee that anyone will do as I wish. The NHS should take notice of patients opinions and change this to an opt in choice.

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Richram said on 14 January 2014

I phoned and was very happy with the responses I got. I did however get annoyed with the survey that I agreed to use afterwards. The first question asked if I was a patient, a citizen or a medical professional. I simply don't understand the citizen option! None of us are citizens we are subjects of the queen(look in your passport) and by being in the country we are all patients anyway.

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Rachel NHSE said on 14 January 2014

In answer to the questions about how data will be used, by sharing information about the care you have received, the NHS can help improve care for all. Your information lets us see how well health and social care services are doing.

Take a fictional example: you live in Bath and experience a 12 week delay between seeing your GP for the first time with symptoms and completing your hospital treatment. Your friend has the same condition but lives in Bristol. She has a 3 week delay. What is the NHS in Bristol doing differently from the NHS in Bath? Where are the delays occurring in Bath that didn't happen for your friend in Bristol? Did you have more appointments that could have been streamlined? What can be learnt from the experience of patients in Bristol and applied to other areas?

It is not necessary to know the identities of patients receiving care in Bristol or Bath to conduct this type of research. However, it is necessary to combine the information from the different GP practices and hospitals to look at these types of scenarios in detail. The lessons learnt could then be used to improve the delivery of services and care across the country.

Rachel Merrett (NHS England)

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Rachel NHSE said on 14 January 2014

Hi ClassicLady

The short answer to your question is no your data will not be used in the way you describe.

In most cases, researchers can carry out their studies using information that does not identify you. Occasionally, however, medical researchers need to use information that does identify you.

Only researchers who have obtained your permission or who have been granted legal approval are allowed to access information that identifies individuals. Only the Secretary of State for Health or the Health Research Authority (HRA) can grant this legal approval and they do so following independent advice from the Confidentiality Advisory Group (CAG).

You can have a look at the research projects which have been approved by CAG here:

http://www.hra.nhs.uk/about-the-hra/our-committees/section-251/cag-advice-and-approval-decisions/

On the HRA website, you can also read about the strict criteria that applicants must meet.

Further information about the use of data for research is in the patient FAQs (see FAQs 21 and 22)

I hope this helps
Rachel Merrett, NHS England

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Rachel NHSE said on 14 January 2014

Picking up your opt in comments:

The Health and Social Care Act 2012 empowers the Health and Social Care Information Centre (HSCIC) to require health and social care organisations to send it personal confidential data in limited circumstances without seeking your consent.

The Act was passed because parliament considered that the data collected as part of care were so valuable and so necessary for the NHS to function properly that there was a greater good in ensuring the data were available to the HSCIC so that they could be used to deliver high quality health and care services for the benefit of all. There is more information about the benefits that your data can bring to all patients in the leaflet.

However, you can object to confidential information being shared outside of your GP practice for purposes beyond your direct care. Just inform your GP practice and let them know your wishes.

There is more information about how the HSCIC protects your privacy at: http://www.hscic.gov.uk/patientconf

Rachel Merrett (NHS England)

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Fitzwillam said on 13 January 2014

I notice this page is not being reviewed until 2015 so does anybody care about these comments?
Our local practicer is hard to contact as the phone lines are busy with constant messages about calling another time. When I get through I doubt they will bother to put notes on my records opting out of data sharing. What proof have I that they will do as I ask anyway? They dont even want to see patients if they can avoid it.

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jessi777 said on 13 January 2014

I got the leaflet today too and I would like to know why they want my information , what for , and who its likely to go to also the question that i most want to ask and im writing to my MP about this is why i wasnet asked so i could make an informed choice.It is polite to ask us they are our records if the bank did this they would be fined.

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sarahjayne7 said on 13 January 2014

I agree totally it should be an Opt in situation not opt out, surely they have to have permission ? It is a total disregard of our privacy and they are not telling us exactly what "research companies" this is going to. The form as the other comment says does not lay our proper procedure. Where is the opt our form ? And it was with a pile of junk mail in my mail box this is a disgrace. What about people who do not get the leaflet for some reason or are living away.
It is quite frightening what they are doing with OUR information when we led to believe it is all confidential.
I really do think we are being treated shocking and with total disregard.

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spiritfree said on 13 January 2014

The leaflet is very vague about how this information will be used and does not give any assurance at all that this will not end up in the hands of commercial organisations.

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disc connect said on 13 January 2014

marktwo advises, 'You have a legal right to see your information and to get it corrected.' without explaining how to do this. I expect most of our records are incorrect, so this whole exercise is a joke. The NHS have no idea what the word 'information' means. I suspect that this is about centralising records to cut jobs, so the information will never actually be shared. It will probably be archived in such a way that it is almost impossible to access. It certainly will not be shared with the patients involved. What the NHS should be doing is looking at how other European health services share and disseminate information. This is the only way things will improve. To quote from a German doctor I once visited, " I keep meeting English people with problems that were never treated correctly, because they were never told what was wrong with them. In Germany we tell patients what is wrong with them and then we heal them". Things will not improve till the NHS start passing information on to the patients, so that they can make a decision as to how best they can be treated.

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classiclady said on 13 January 2014

The 'Better information means better care' leaflet came through my letterbox this morning with other junk mail. It seems a good idea in principle but I'm concerned at the paragraph 'We sometimes release confidential information to approved researchers......' Does this include drug companies who will then bombard me with more junk mail promoting their products? Who are these 'approved researchers'? Answers please!

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User48914 said on 09 January 2014

Why do I need to opt out of this?

It should be an "opt in" situation by default, not an opt out.

I only learned of this by sheer luck as the "leaflet" was pushed through my letterbox stuffed inside a piece of junk mail for take-away food!

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Mike Newland said on 09 January 2014

I opted out several years ago submitting a form to my GP and receiving an acknowledgement.

The leaflet being sent out says that even if you have done this it does not count and you need to do it again. This is a total waste of everyone's time.

Worse, the leaflet does not even lay out a definitive procedure for doing so. All it says it get in touch with your GP. Why is a form not provided?

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russone said on 08 January 2014

With regard to Opting Out of Personal Identification Data being made available to anyone, via your Medical Records, then one can do as I did and write to you GP Practice and request that both 'dissent codes' are added to your records. A pro-forma dissent letter to your GP can be downloaded from:

http://nationalhealthaction.us7.list-manage1.com/track/click?u=937c3e62bc24fa37708920cc9&id=782ececb55&e=e59b971b79

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ejrobson said on 17 December 2013

I understand people having concerns about information held on a system open to many trusted staff in the NHS. There will always be staff who will look at data that they have no right of access to but this is where the robust audit procedures of the system come into place. Staff will be sacked and have been.

I would always prefer someone having access to my data if I am unable to give consent because I am unconcious, do not have the capacity to give consent so the right people can treat me. Those people who are concerned to their right of privacy, may end up being mistreated because the right information was not available at the right time. I am sure you will complain about that as well.

The opt in is not a legal requirement but good practice. If you wish to opt out, then opt out. If you wish to know who has access to your data just ask. Dont just moan about your rights.

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horationelson150 said on 28 November 2013

I see no reason why I should not agree with these proposals. But surely it would have been far better for the original plan to have been introduced and patients records be available on any GP's screen here or in Europe. If I had a serious illness anywhere away from home, surely better for any GP to have full access to all my records. I imagine that the civil liberties luddites were totally against this!

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NBH said on 07 November 2013

"Tornabara said on 23 August 2013
How do I opt out?"

There is no standard opt-out form - and you don't need one.

You can just tell your GP practice (speak to them, email them, ring them), or speak to your GP the next time that you see him/her for a medical reason. You can just write them a letter, asking for the two codes to be put in your notes.

If you want a form, one is available on medconfidential.org or here: http://tinyurl.com/cdooform

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cannot opt out said on 06 November 2013

My attempts to opt out of care.data so far:
I would like to opt out but I am not currently registered with a GP, so my records are in storage. The records used to be with my Primary Care Trust but it no longer exists.
Attempt 1.
No information on NHS websites as to location of records.
Attempt 2.
Try contact NHS record departments by telephone. Given 6 different telephone numbers, none able to help. Begin to find out many NHS employees have never heard of NHS care.data.
Attempt 3.
Contact NHS England by telephone who say my records are held at a GP practitioner services unit and provide address.
Write and send covering letter and care.data opt out form to unit.
No response.
Contact unit by telephone, deny receiving my letter and say they never deal with records from my area anyway.
Attempt 4.
Contact NHS England again by telephone, say they will look into it and get back to me.
NHS England say after a series of 8 telephone calls, they may have a telephone number for someone who knows where my records are, but do not have any address details.
Attempt 5.
Ring telephone number provided by NHS England.
No one answers, just an answerphone recording saying if you leave your details, someone will get back to you.
No one has.
Still have no idea where my medical records are so I can send an care.data opt out form.

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marktwo said on 01 November 2013

@pipesmoker24: If you want good healthcare, you need to ensure that your medical records are correct! You have a legal right to see your information and to get it corrected.

Re opting in versus opting out…In general, where the question concerns something that most people will want – such as decently joined-up healthcare – it makes sense for people to be opted in by default, with the option of opting out. (If it something that few people will want, either because it is specialised or generally considered undesirable, such as junk mail, the opposite would apply.)

Of course, joined-up information is inherently less secure as it has more points of access. However, my health service work involves risk stratification, and I can report from experience that the rules about what staff are allowed to do with patient data (outside of using it for direct patient care) are now *much* stricter, as well as clearer in many ways.

If you feel that the risks of joined-up healthcare outweigh the benefits, feel free to opt out. However, remember the true story of my ex-landlady, who would probably still be alive if her dentist had known that she was fatally allergic to the anaesthetic he gave her in all innocence.

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janan3 said on 25 October 2013

Only 9 comments from the whole of the country?? This certainly illustrates the huge lack of consultation and publicity. How exactly are people going to opt out if they are not even aware they are being opted in? It definitely should a choice to actively opt in.

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pipesmoker24 said on 12 October 2013

I intend to opt out and that will probably help the NHS to provide better care because I know, some and suspect other, parts of my medical record are inaccurate.

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J76 said on 08 October 2013

The lack ofr publicity and public consultation on this is a disgrace. I only know because my GP has taken steps to inform his patients about this and their right to opt out.

The idea that because your name will not be recorded it is in some way ananomised. you will be able to be identified in a couple of minutes from your NHS number which is unique to the individual and your post code indicates where you live to within a very few properties.

This is another invasion of privacy on a new data base held by the state.

I will opt out and ensure everyone I know is aware of this.

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Lexy58 said on 02 October 2013

Appalling lack of communication and consultation about this!

Why is there not a presumption of opt out - with explicit opt in procedures?

What proportion of the population can be identified by age, sex and postcode? About 90% or is it more???

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jocagil said on 13 September 2013

Concerned about the lack of publicity for this, lack of resources for Practices and PPG's to get this information out and the tight timescales involved.

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Hantsman said on 11 September 2013

I have just received the information regarding the Sumary Care Record and have concerns.
To check that the information is correct I must see my GP. They do not have enough time in the day already without everybody wanting to check their records. Why not just request a print which can be collected from sugery with some ID?
Will this information be held securely in this country or farmed out to somewhere cheaper and possibly more prone to hacking?

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117 said on 05 September 2013

I completely agree with the comment posted already. Why is there not a simple form that I can complete and hand into the surgery. Surgeries are already under huge pressure without using reception and GP time getting an entry put onto my record to protect my data that could be used by patients.

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Teatert said on 27 August 2013

I am pleased to know that the HSCIC is committed to the very highest standards of privacy. It is somewhat frustrating they do not have a simple form which I can download and pass to my GP practice if I do not want my personal medical records collected. It would be helpful for such an opt out form to be available on this page rather than an instruction to talk to my GP surgery who are busy enough.

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Tornabara said on 23 August 2013

How do I opt out?

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Page last reviewed: 02/01/2013

Next review due: 02/01/2015

Braille copies of the Better information means better care (PDF, 2Mb) leaflet are available upon request using our dedicated patient information line on 0300 456 3531. Additionally you can use the text phone number 0208 742 8620.

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Media last reviewed: 23/01/2014

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