Not to want the NHS to share my confidential medical records?

[SusanC5]

I'm unhappy that any medical information that I share with my GP will be shared as from April this year I believe. My postcode and my NHS number could be released to "approved researchers".

I do not trust the NHS with my personal and confidential information.

AIBU?

I have also been told that HES is potentially unlawful & breaches DPA fair processing If I get any more information I will share it

That's a new one on me! HES has been going for years....in fact the whole reason we know about the Mid-Staffs scandal is because of HES data.

Enlightened shouldn't it be 70medicalresearchorganisations4data rather than patients4data ?

If I find out more I shall post it

They are patients too!

Really zeezak I think their interest is more 'commercial' then that despite their name

Patients4Data, which represents charities and drug companies.

But they are still patients. Even people that work for pharmaceutical companies are patients.

I am sure I saw somewhere on this long thread that we only had until the 1st march to opt out. But cant see anything on the care data website to say this and there is no cut off date give on my GP practice website info on the topic.
Can anyone clarify if there is a cut off date for the forms/letters of dissent?

But if they are private patients then their data will not be uploaded anyway Dr Lewis told me that himself. And I would bet anything that the CEOS and the decision makers for the big pharmas and charities will be earning enough to be able to afford private healthcare and thats the people that patients4care represents not the actual workers.

doad - it has been put on hold for 6 months so no data will be collected just yet as we are all going to be given enough time to see the error of our ways and decide we don't want to opt out.

I am still waiting to find out if people who have already opted out need to do so again before the six months 'pause' comes to an end as its possible we may be asked to do so in a different way if our letters an forms are no longer going to be accepted or there are different read codes required.

of thanks mrsd
Can I ask how you know that - was there a news report or something?
I feel really thick to have missed all this - I can only imagine I saw something and though it was the same as summary care which I have already opted out of.

Yes Here is the link www.theguardian.com/society/2014/feb/18/nhs-delays-sharing-medical-records-care-data

And it is totally different to the SCRs which are used for record sharing amongst medical professionals treating you.

Have a look on the net about care.data and make up your own mind and of course there will be a lot more info from both 'sides' as the new date gets closer

Thanks for the link

THis will also give people more information as to why it has been put on hold for 6 months

www.computerweekly.com/blogs/public-sector/2014/02/legal-straights-forced-nhs-del.html

The medical records of every NHS hospital patient in the country have been sold for insurance purposes, The Telegraph can reveal.

CFS Kate - people like some of the posters who are for it are going to highlight this

The Department of Health said: "The rules changed last year so this would no longer be allowed. Information like this can only be accessed now if there is a clear benefit to improving health or health systems."

This is untrue Insurance companies who will access the Data from NSCIC
will only be made to PROMISE they will not use it for for selling or administrating they have not been told they are forbidden by law to do so.

Latecomer here, but someone has kindly dug up an old thread on which I'd put interesting links. So I'm reposting.

This is a list of "products" from HSCIC's Service Charges 2013/14. It seems HSCIC customers can specifically ask for patient-identifiable data.

Tabulation: A statistical table of aggregate data.

Bespoke extract - pseudonymised: A one-off extract tailored to the customer’s requirements of specified data fields containing no patient identifiable or sensitive data.

Bespoke extract - containing personal confidential data: A one-off extract tailored to the customer’s requirements of specified data fields containing patient identifiable data, sensitive data items or both.

Standard extract: Cumulative data for the financial year to date, delivered on a monthly basis via a subscription service. Users sign up to receive a year’s worth of data, delivered in monthly increments

Bespoke data linkage: A bespoke service linking one or more data sets held by the HSCIC to data supplied by the customer.

Patient status and/or tracking: Products designed to enable customers to receive one-off or on-going notifications of mortality and morbidity events affecting a specified patient cohort.

List cleaning: Validating demographic data to ensure it is accurate and improve linkage outcomes.

Prices for patient status and patient tracking include £2.26 for manual matching per record, and £3.78 for ad hoc matching per record. That's clearly about individual patients.

Interesting, a standard data set containing no personal confidential data is charged at £630, while a standard data set that does contain personal confidential data is £1094. Which I dare say reflects the data's increased value to the customer.

Thanks parsing I linked that in another thread in reply to someone who said ' as far as I know there are no plans for the nhs to sell patient identifiable data to ANYONE'

After I linked that - this was her response

Its actually quite amusing that you think that you are better informed than the people who's job it is to facilitate clinical research in a safe, secure way and/or to protect the confidentiality of patients and their information.

And also in reply to another poster who was also rather annoyed that I questioned her knowledge as she has a most important job in research so has all the answers

Neither of them want to debate with me and have accused me of scare mongering.

There will be a lot more information coming from some very informed people.

"Amusing" that you're better informed? How about fucking terrifying?

TBF, of course I understand that researchers are focussed on their objectives, and obstacles are irritating. Security is always the thing that gets in the way of life/work. It's an annoyance. We'd be so much more efficient without it.

Doesn't matter whether it's ridiculous queues at airport scanners, paper medical records inconveniently locked in a cupboard on the ward, or rules against copying tens of thousands of child benefit records onto a CD and sticking it in the post because another office needs it. Security gets in the way. So we circumvent it. And then things go tits up and we say, Oops, too late now.

well worth a read

www.theguardian.com/society/2014/feb/24/drug-makers-patient-records-database

Tim Kelsey, NHS England's national director for patients and information, stated in a 2009 article for Prospect Magazine: "But no one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised.

Dr Geraint Lewis, Chief Data Officer at NHS England told me when I asked if private patients records were being up loaded 'only people whose care is funded by the NHS will have their records updated.

So here we have it folks the real attitude of these people - we give you 'free' NHS care and in return we expect to use all your details as we think fit.

I think they forget who actually pays for this NHS funded care and public service - the good old put upon Tax and NI payer - in other words US

sorry uploaded not updated

It's on the BBC News website too.

Medical Records Rules Broken

I've opted out and so have all my family. This is just horrific.