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Update: medical records & care.data - admission that patients ‘may lose trust’ in NHS

Our original report on 'care.data' can still be read below this new report.

NHS England, who are running the care.data scheme to share medical records with third parties, have issued a worrying risk assessment of their scheme.

It says that using medical records without patients’ consent may lead to them losing trust in the confidentiality of the NHS.  

The assessment says the scheme runs the risk of degrading patient trust in the NHS, putting information at risk of hackers and identifies ‘a small residual risk’ that patients will be identified.

A frame from the NHS England video: is privacy just like a jigsaw?A frame from the NHS England video: is privacy just like a jigsaw?But it states baldly that the projected benefits of the scheme (see our earlier story below) outweigh the risks to patient privacy.  One of the identified benefits is providing a boost to economic growth.

A GP who lives in the north of England where the leaflets have already been delivered, wrote to the GP’s magazine PULSE that she had not been told how patients should opt out.  She added that some GPs were telling their patients to opt out of the ‘summary record scheme’ which is not at all the same as care.data.

Pulse had previously reported a poll of GPs indicating that 40 per cent of England’s GPs would be opting out of care.data as regards their own medical records.

This GP pointed out that as information already given by patients was provided in strict confidence and good faith that it would never be shared, the default position ought to be that patients opt in to the scheme rather than having the responsibility to opt out.

She also says that the NHS’ own mandatory training on Information Governance states that consent must be sought each time information from medical records is proposed to be shared.  “How”, she asks, “can automatic sharing of these past records without actively seeking current verbal or written consent be legal under the data protection act?”

The basic problem is that at law medical records remain the property of the Secretary of State for Health – the man whose overall responsibility for the NHS was removed by the coalition government’s Health and Social Care Act.

The opt out form can be found here.

Go to this site to see the care.data leaflet.

And to this site to read the full risk assessment text from NHS England.

There is a short animated video promoting care.data on this page.

MNO's FIRST REPORT ON CARE.DATA STARTS HERE:

Before the end of the month we will all be getting a leaflet through the door about the government’s plans for our medical records.

The leaflet is titled “Better information means better care” and will explain how, from March, our medical records will be extracted from GP surgeries and passed to a new body called the Health and Social Care Information centre (HSCIC) so they can be placed on the ‘care.data’ database.

The idea is to allow medical records to be shared with other parts of the NHS, researchers and private pharmaceutical companies.  And the aim is to improve and hasten research that will lead to advances in medicines and treatments.

The information will be ‘anonymised’ – it will not include your name but will still carry your NHS number, date of birth, post code, gender and ethnicity.  And as people in rural post codes know it is very easy to identify who’s who among a small number of homes.

It has also been admitted that there is a small risk that some patients could be identified by insurers and commercial health providers who could match their own data against the anonymised records.

If they have got permission to use the records and you are a client, they could match the anonymised information with their own data.   They will have your date of birth and post code and could make a match with the same categories of information on medical records.

Then they could see whether you had a drink problem or a long-term illness or even if you had told your doctor a certain condition was prevalent in your family.

The scheme is backed by many medical charities who say they need it to speed up their research.  And it is opposed by some who see it as a breach of principle about keeping private our most private data.

Any organisation or researchers can apply to the HSCIC for data and each application will be considered individually. 

The HSCIC will charge a fee to cover its costs, but there is no control at all over the potential profits that can be made from the data.

The government’s original idea was to make the scheme compulsory.  But you will be able to opt out of it.  

However the leaflet will not contain an opt-out form.  To opt out you have to go to your GP. And there has been criticism that information about this route for opting out is pretty well hidden away.

When asked in the House of Commons whether the Department of Health had an estimate of the number of hours GPs will spend talking to patients about care.data, the minister, Dr Dan Poulter, Parliamentary Under Secretary of State in the Department of Health, had no clear answer.  But there is, he said, “a patient information line which patients can call if they have questions, which will ease the burden on GP practices.”

There is a possibility that the scheme will prove to be breach of new EU privacy rules.

The costs of this scheme have not been finalised.  But the leaflet distribution will cost NHS England £1.2 million.

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  • Town-Hall-2011-05-03 08-
  • Silbury-Sunset---10-06-08-----07
  • Marlborough-2013-04-18 St Peters
  • IMG 8472
  • IMG 9097