Forum Topic

Patient Records for sale???

I believe a number of GP's have been asked for the private medical details of their patients which may then be sold by the NHS to varius organisations such as Insuance, Banks and so on!A friend mentioned this was featured on breakfast TV last Thursday morning.If this is true (and I have no reason to doubt it) surely it is totally wrong to pass this private and personal information on to anyone let alone organisations who would obviously use this information for their own gain?My friend worked for 9 years in a hospital and she is absolutely astonished, and livid, to think that the NHS, or the Government, (whoever is responsible for such a crazy idea) could even consider this because NO-ONE is allowed to look at a patient's medical information, not even their family.A patient's medical record should be between them annd their Doctor, unless the patient gives permission for this information to be made available to another body.Visitors in a hospital are not even allowed to pick up the chart at the end of the patient's bed to read let alone handing this valuable data on to goodness know who else!Doctors won't give results of tests to a spouse or partner, and that's how it should be. Where do we get a say in all this?The governmet are not to be trusted with all this innformation, remember many cases of files going missing, information being left on trains or thrown in rubbish bins?Has anyone heard about this, and what do you think about it?I know the NHS needs more money but there must be better ways of raising it!

Jean F Fernandez ● 4376d30 Comments

On the Paper Review Sky News this evening:Now they ARE selling our medical health records, so despite assurances from many quarters it would appear the warnings were right.

Jean F Fernandez ● 3962d

Same here Nigel, I check ALL incoming mail carefully!It has been admitted that he public were not fully informed so the blame does not lie with us!

Jean F Fernandez ● 4367d

I have absolutely no recollection of receiving such a leaflet and I receive very little junk mail to obfuscate my memory of its non receipt.

Nigel Brooks ● 4367d

"'the powers that be' have admitted that the communications campaign, particularly giving people the right to opt out has been poorly managed."Only because people don't read their post properly.

Susan Kelly ● 4367d

The launch of the database has been delayed by six months as 'the powers that be' have admitted that the communications campaign, particularly giving people the right to opt out has been poorly managed.http://www.bbc.co.uk/news/health-26239532

Nigel Brooks ● 4367d

Gerry, the records of ALL patients will be sold to the highest bidder, plus details of gender, postcode, NHS number so the patient could easily be identified.This data could be used by hackers, as well as insurance companies, pharmaceutical companies - the list is endless, which is why doctors and now even the NHS is concerned that this data will get into the wrong hands.A huge percentage of the population are NOT aware of this new scheme, I am just putting the information on this forum so people can decide whether or not to opt out of the  scheme.All people have to do is inform their GP that they wish to opt out.Medical research can still be carried out but without identifying each patient.

Jean F Fernandez ● 4368d

Jean I'm still a bit unclear about these patients' records. Are these records of NHS patients or are they private patients' records please?

Gerry Tan ● 4368d

The majority of GPs say they do not fully understand a controversial NHS project to harvest data from patient  records.  8 in 10 family doctors told a survey they are unsure how the private medical records will be used.Last night it also emerged that the scheme has been identified as a privacy threat by health service's own risk assessors.A report by the NHS England warns of patients being targeted  by hackers and suggests they could lose faith in the services if their confidentially is breached.The news will add to growing concerns about the scheme, which starts next month and affects every patient in the community unless they opt out.NHS bosses claim  the details will be used to highlight areas of poor care and find new treatments - but there is mounting concern that information will fall into the hands of hackers and insurance firms.Many patients are also unaware it is happening at all. In a poll of 667 GPs the vast majority - 80% - said they were not clear of how the data would be used. Some 55% said they had concerns about the project, while 77% said NHS officials had not given patients enough information. NHS England plans to extract dates of birth, and postcodes along with details about illnesses, tests or prescriptions and store it on a national database. It will then be passed on to researchers and private firms - including insurance companies - who will supposedly look for poor care. The process happens automatically unless patients contact their GP to object.But there is outrage at the scheme and at least 4 family doctors have opted out the thousands of patients on their lists.Many say they fear patients will stop trusting them with highly confidential information in case it falls into the wrong hands - a decision that could delay a diagnosis.The Mail has revealed how nearly 2000 patients records go missing across the NHS every day - some ending up on eBay, in landfill sites, dropped in the street or left in stores.Experts worry that even more data will be mislaid if the data base scheme goes ahead because it will be shared with so many third parties. Dr John Cormack, a GP in South Woodham, Ferrers, Essex, who is opting all his patients out of the project, said putting sensitive information about patients in one will create a 'honeypot for hackers'.Confidentiality is the cornerstone of general practice - without it there is no trust, he said.

Jean F Fernandez ● 4368d

I think that 'recall' is the operative word here, Fred. I had to have a good think about it before remembering that we did, indeed, get this leaflet. I suspect that most people put it straight in the bin.

Susan Kelly ● 4370d

As mentioned in my newspaper:Quote:"Doctors have been warned that they're breaking the law if they don't forward patient's records to the Government.When did this aw appear on the statute books? The information on this issue arrived at our homes inside a pile of junk mail. Many people will have thrown it away without reading it. This is probably what the Government hoped for when it sent it out in this manner.GPs who forward only a small number of records will be investigated to see if they are breaking the law. That sounds like a directive from the old Soviet Union. Imagine the Tories' response if this had been proposed by a Labour Government".As a matter of fact I did NOT receive such a leaflet, nor did the friend who brought this matter to my attention. The first she heard of the scheme was when watching a discussion on Breakfast TV last week.Quote 2"How strange that a Government which is adamant companies must require customers to 'opt in' to allow their information to be referred to third parties, insists NHS patients must 'opt out'. Is this to allow the NHS to obtain money from insurance firms given access to the data?"At least now forum members can check out the details and make their own informed choice.

Jean F Fernandez ● 4370d

Fewer than a third of adults in England recall getting a leaflet about changes to the handling of medical records, a poll for the BBC suggests.

Fred Hunt ● 4370d

"...if most people are too self-absorbed to follow what's going on in the world around them."Thats a bit tough Susan. There are many who don't know the ins-and-outs of this exercise, good though the intentions are. I think we should allow for some ignorance and perhaps apathy.

Gerry Tan ● 4370d

But is has been widely publicised: we got the leaflet about it weeks ago. It's not the government's fault if most people are too self-absorbed to follow what's going on in the world around them.

Susan Kelly ● 4370d

The problem is that this scheme has NOT been widely publicised  everyone I asked had never heard of it.In PULSE magazine it was buried within a paragraph but some Doctors realised the implications and decided to object, they were threatened by the NHS and told they could be struck off!Does this seem fair and open? I certainly don't think so. People should be made fully aware of the new scheme and then allowed to decide whether to opt out or not.

Jean F Fernandez ● 4370d

'If, on the other hand, you are of the opinion that your personal data should remain just that, then surely it is up to the individual to opt out of such a scheme?'Which is precisely what the scheme allows for.

Susan Kelly ● 4371d

"I know my own anonymised data helps with this, and I'm really happy for it to continue. There certainly seems to be a lot of misinformation around..."Nick, I was fully supportive of this as I have benefited from 'leading edge' research by Imperial College. But as there is not absolutely certainty that the data is fully anonymised I opted out.

Nigel Brooks ● 4371d

As I said before if people are happy for their private and confidential medical information plus their NHS number, postcode and gender sold to the highest biddder that's fine.If, on the other hand, you are of the opinion that your personal data should remain just that,  then surely it is up to the individual to opt out of such a scheme?Doctor/patient confidentially and trust should remain so if this is the wish of the patient. There is a sign on the wall in my Doctor's surgery stating that no information will be divulged to anyone without the consent of the patient.A friend who worked in the medical profession said that your NHS number would be ussful to someone wishing to carry out identity fraud so as far as I am concerned my personal information should remain just that. It is up to the individual to make their own choice.

Jean F Fernandez ● 4371d

I don't really care if anyone knows that I have asthma.

Susan Kelly ● 4371d

2000 patient's records lost every DAY - it doesn't restore one's faith in the NHS ability to keep records safe does it?

Jean F Fernandez ● 4371d

Taken from ChiswickW4 forum on the same subject:I have to declare a major interest in this - I'm a university academic who investigates the unexpected effects of medications; ususally harms, but occasionally benefits too. A link to the data source I use is here (http://www.cprd.com/intro.asp). I've been using this sort of data for nearly 10 years for my research.  UK NHS data are genuinely world class and envied by many other countries. I cannot identify anyone from the data, and for insurace companies, or anyone else to do so would be a criminal offence as far as I can see, in the same way as if they broke into my GP's surgery to steal my records. What worries me is that if many people opt out, the data will no longer be representative and we will not be able to do the research any more. We all benefit enormously from the kind of research done with this data, whether it's in universities or industry. Even within my own narrow field, a wealth of evidence about drug side effects has been uncovered that protects people taking medications by informing both them and their doctors about the risks involved, and in some instances preventing people from taking medicines that carry too high a risk. I know my own anonymised data helps with this, and I'm really happy for it to continue. There certainly seems to be a lot of misinformation around...

Nick Jenkins ● 4374d

Unless patients actually opt out your full details will be sold off to the highest bidder, it doesn't get much clearer than that I'm afraid.I have completed an opt out form and lodged it with my GP today.www.medconfidential.org/how-to-opt-outIf you are happy for your private medical to be available to all and sundry then take no action. The choice is there but this new system is happening soon.

Jean F Fernandez ● 4374d

Medical detail data being sold, leaked or purloined is frightening. I don't know much about these medical records - are they all records of NHS patients? - are private nonNHS patients included?

Gerry Tan ● 4374d

Given the fact that much of our data is managed abroad anyway there is no real security. Outsourcing has guaranteed that. So our data being in India means that it will just get passed on. No real culture of security. Corruption will ensure that. These big projects are handled by the usual subjects of incompetence so we can expect confidential data appearing searchable on the web and other horror stories.

Peter Chadburn ● 4375d

The GP Magazine PULSE on 7/2/14 states "Patients who have opted out of the scheme will have their records sent to the HSCIC stripped of identifiers"This confirms something buried on Page 9 of the NHS England's recently published care.data Privacy Impact Assessment (PDF) which states:Where patients have objected to the flow of their personal confidential data from the general practice record the HSCIC will receive clinical data without any identifiers attached (i.e. anonymised data).www.medconfidential.org/how-to-opt-out

Jean F Fernandez ● 4375d

"but it seems more likely that This Morning have it wrong.  "Agree, although I understand that the data is submitted 'complete' with the identifying data anonymised or redacted by a 'central agency'. This was most certainly the impression I gained from an interview with a former 'senior manager' from, I believe the successor organisation to 'Connecting for health' who expressed grave concerns about their ability to maintain full information security

Nigel Brooks ● 4375d

It doesn't mean that they have this right, though.  Morning TV is not exactly the definitive version of the news.It does rather sound like a distorted version of the programme Chris mentions, which does have its own issues but which is a good thing in general if (big if) they can run it well enough to get people's trust:http://www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buyI think the two of you are talking about the same thing.If there really is a separate system that sells name and addresses I would be surprised.  It is possible, but it seems more likely that This Morning have it wrong.

Gerald Cabb ● 4375d

Perhaps those of you who would like more information should go on to catch up TV and watch Thursday morning's edition of This Morning, it is just about 5 or 10 minutes into the programme, then you will realise that this is an entirely different system that is being proposed.It clearly mentions that the patients full details including names and addresses will be included.

Jean F Fernandez ● 4375d

Somewhat predictably, no it's not true.Some enlightened (i.e. not the UK) countries have for many years integrated the data from separate clinical systems in primary and secondary care. Amongst other things this gives a complete view of patients' care needs and also enables clever things like predicting which patients will get ill and when - by matching patterns in the data. This particular use has the potential to save significant amounts of money by intensively managing patients' conditions before they become acute i.e. proactively caring rather than reactively caring.All of this occurs without the NHS number, patient name or other patient identifiable data. Per usual, people (to be clear - not the person who started this thread) who haven't actually bothered to read the detail of the changes and aren't interesting in doing anything other than pointless speculating have whipped a simple set of changes up into the usual NHS privatisation nonsense, confusing patients and worrying people needlessly in the process.

Chris Martin ● 4376d

The data is anonymised with no names or addresses included and you can simply opt out of any of your data being passed on or used.I was enthusiastic about this as I saw it as a way to give researchers solid data to help them find cures and for the NHS to shape future services. However given successive governments' total inability to manage IT programmes let alone one of this size I have decided to opt out as I have no confidence that my personal data will be secure.

Nigel Brooks ● 4376d

The selling of NHS GPs' medical records is disturbing news Jean. Has it started to happen?  I don't think I'd want all my medical weaknesses, tendencies and propensities given to anyone. Frightening really.

Gerry Tan ● 4376d