Tories put private medical records for sale on open market

[TonyGosling]

Opt out of the sale of your private medical records here
http://www.medconfidential.org/how-to-opt-out/

UK SET TO SELL SENSITIVE NHS RECORDS TO COMMERCIAL COMPANIES WITH NO MEANINGFUL PRIVACY PROTECTIONS
http://www.blacklistednews.com/UK_set_to_sell_sensitive_NHS_records_to _commercial_companies_with_no_meaningful_privacy_protections/32647/0/3 8/38/Y/M.html
February 5, 2014

SOURCE: CORY DOCTOROW, BOINGBOING

The UK government’s Health and Social Care Information Centre quietly announced plans to share all patient records held by the National Health Service with private companies, from insurers to pharmaceutical companies. The information sharing is on an opt-out basis, so if you don’t want your “clinical records, mental health consultations, drug addiction rehabilitation details, dsexual health clinic attendance and abortion procedures” shared, along with your “GP records, HS numbers, post-codes, gender, date of birth,” you need to contact your doctor and opt out of the process.
This is a complex issue. Large data-sets are the lifeblood of epidemiology and evidence-based care and policy, and the desire to extract useful health information from this data is a legitimate one.

However, it’s clear that no one involved in the process gives a damn about privacy. These data-sets — which will be sold on the open market to commercial operators — are “anonymized” and “pseudonymized” through processes that don’t work, have never worked, and are well-documented to be without any basis in reality.

And that’s the thing that brings the whole enterprise out of the realm of legitimate scientific project and into the realm of corporatist hucksterism. Once the architects of this project announced that its privacy protections would be based on junk science, they lost any claim they had to operating in good faith.

Effectively, the managers of this programme have said, “We can’t figure out how to protect the most private, potentially damaging facts of your life, so we’re not going to try.” It is pure cynicism, and it makes me furious. It brings the whole field of evidence-based medicine into disrepute. It is a scandal. And as it goes ahead, it will spectacularly destroy the lives of random people in the UK through the involuntary, totally foreseeable disclosure of health information, in ways that make the general public leery of any participation in this kind of inquiry.

If you set about to discredit the open data movement, you could do no better than this.

–

Update: As if that wasn’t bad enough, Noemi adds, “The contract for handling and managing the care data has been given to ATOS. This is the same company whose disability benefit assessment has been found to be flawed and unacceptable in 40% of cases by the Audit Commission.” Here’s more.

HSCIC’s own guide to confidentiality points out the potential for messy dilemmas. For instance, the guide mentions that “removing the individual’s name, age, address and other personal identifiers may not be sufficient to effectively anonymise the information.” Therefore, even so-called “green” data can leak personal health information.

And while HSCIC attempts to fix legal issues by stating the information should always be shared in accordance with the law and organisations must abide by legal provisions which may ban or limit attempts to re-identify confidential information, plans for HSCIC to publicly track client compliance are yet to be revealed.

The types of privacy and legal issues that the Spine database creates are immense. For instance, under Section 33A and section 41 of the UK’s Human Fertilisation and Embryology Act 1990, any disclosure of information relating to assisted conception (for example information about gamete donors and people receiving treatment) is usually a criminal offense. How exactly this information would be safeguarded is currently unknown.

Though privacy advocates have bemoaned the lack of public clarity and transparency over exactly which organisations will be able to buy particularly sensitive datasets, two companies may already have a head-start to the treasure trove: MedRed and BT.

Care.data and the murky US partnership that puts your health data at risk [Asher Wolf/Wired UK]

[fish5133]

The NHS have got very crafty about this up here on Merseyside. We recently had a very inoccuous leaflet come through the door along with a load of other junk mail and all heading for the bin till i spotted what it was about. Previously NHS communications about our med records came in an easily identifiable envelope and clear instructions about opting out. This latest junk mail will easily have been missed by thousands who dont realise they have to now opt out of having their med records passed on.

[Frazzel]

Your Medical Records For Sale

A leaflet from NHS England called “Better Information Means Better Care” supposedly has been sent to all households recently telling us that the nations medical records will be uploaded to a central database, allowing access by third parties.
It is claimed to be good for research, allowing government to respond to health needs across England.

But its an infringement of privacy.



Heres information the leaflet omitted.

GP Dr Marie-Louise Tidmarsh, says patients are being misled about the so-called confidential nature of the data extractions.
Under the Health and Social Care Act 2012, GP’s are forced by law, to supply data to the Health and Social care Information centre (HSCIC). The HSCIC are using services of the infamous, ATOS, slated for its appalling treatment sick and disabled people.
The scheme is called CareData and allows researchers, companies, government departments, and others, access to the data for a fee.
Uploads of data from G P’s surgeries will start this March 2014, so if you want to opt out, do so now, and opt out your children too, otherwise, your consent will be implied. There’s opt out forms at GP’s practise’s.
GP, Dr Neil Bhatia is opting all his patients out despite this breaking the law!
Your Caredata record wont be shared with other GP’s or hospitals treating you.

The real purpose for CareData is data mining and linkage. There’s plans to expand data to include medical tests, medications prescribed, nursing observations, and data from community and social care.
Pay-for-access will allow pseudomynised data, your date of birth, postcode, gender, ethnicity, and NHS number, physical and mental health, smoking and drinking habits, to be available to institutions, universities, businesses, insurance and drugs companies.
Even Mark Davis, from HSCIC admits there’s a “small risk” that patients could be identified as pseudonymised records can be matched up with other records or just searching on the internet. Mr Davies said: “We have private hospitals and companies like Virgin who are purchasing NHS patient care now….” And of course, they will seek access to CareData.
MPs, GP’s, medConfidential, OpenRights group, are concerned who will have your data and how its going to be used.

you could be discriminated against by employers or insurance companies for instance.
Campaigner, Phil Booth warns that “ the people in charge now admit the range of potential customers for this…centralised database ….is effectively limitless.”
Even HSCIC admits that this about NHS privatisation

Dr Peter Swinyard said that GPs were worried patients would lose trust in GP consultations.
Its estimated to cost 50 million pounds of taxpayers money. Surely this would be better spent on patient care?
CareData could contravene the Data Protection Act, and proposed EU laws. Shockingly, the scheme was supposed to have been running last year, but the Information Commissioner delayed it because originally, there was NO opt out option at all!

Call the NHS, write to your MPs.

There's plans to release fully identifiable data at a later date, but this could be against the data prtection Act and, the NHS Act 2006, section 251, which gives the Secretary of state for Health the power to allow data access that fully identifies who you are, only in specific circumstances such as civil or medical emergencies.

Hopefully human rights lawyers might be willing to something about this?


HOW TO OPT OUT _ DO IT NOW!
You only have until March to opt out completely. Go to your GP’s surgery.
Ask that your medical records include two crucial codes:
9Nu0 to stop identifiable data being uploaded from your GP, so it cant be pseudomynised and released. It ensures there is just an unlinked record, but anonymised.
9Nu4 code to stop HSCIC releasing identifiable data from your GP and any other sources.
To be safe, ask hospitals and other medical services to opt you out as well.Make sure you opt out your children as well. As Ross Anderson, Digital rights expert, warns, once your data is uploaded even if you opt out later, the data will not be deleted, and that goes for your children as well.
Write to your MP, phone NHS, with your objections.
This will destroy doctor-patient confidentiality. One hopes that a good lawyer might take legal action against this on behalf of us all.
You only have until March 2014 to opt out. If you don’t, you cant delete the data once its uploaded.

WHERE ARE THE HUMAN RIGHTS LAWYERS? WHAT ARE THEY DOING!!!IF ANYONE CAN DO SO, TAKE THIS TO JUDICIAL REVIEW

http://www.bcfmradio.com/podcasts/20140207170001.mp3
http://www.bcfmradio.com/podcasts/20140207180001.mp3

[TonyGosling]

For sale: your private medical history.
Goal: 200,000
http://action.sumofus.org/a/nhs-patient-corporations/

Your medical records could be sold to the highest bidder. But not if we can stop it.

Starting this year, private companies will be able to buy information on us from the NHS’s new universal patient database -- including everything from mental health conditions, sexually transmitted infections and diseases like cancer -- all linked to your postcode, gender and ethnicity.

We’ve all been opted into the scheme by the government without our knowledge. And the clock is ticking -- the government has said they will upload our private data in a matter of just a few weeks. If we’re going to stop this, we have to act now.

Tell Jeremy Hunt and the NHS not to sell our private medical data.

It doesn’t really get more private than what you discuss with your doctor. They know the most personal things about us -- like whether we’ve ever been depressed, had an embarrassing infection or struggled with drug & alcohol problems. Now imagine, private companies trawling through your records looking for interesting information.

The government claims that individuals won’t be able to be identified. However, many experts have warned that under the current plans, we could easily be singled out through simple cross-referencing of other databases -- especially if you have a rare or unusual condition. Imagine your employer finding that you might have had an abortion when you were a teenager. Or your insurance company finding out you are HIV positive. The consequences for us as individuals could be huge.

We know that when we act together, we can bring about real change. When we fought to get High Street names like River Island and Edinburgh Woollen Mill to sign up to protect Bangladeshi factory workers, we won! Now we need to step up to defend something precious -- our right to privacy.

Tell Jeremy Hunt to stop the sale of our personal medical information to big corporations.


**********
More Information:

NHS patient data to be made available to drug and insurance firms, The Guardian, 19 January 2014.
http://www.theguardian.com/society/2014/jan/19/nhs-patient-data-availa ble-companies-buy

Price list for access to medical data, Health & Social Care Information Centre, January 2014
http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013- 2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

Police will have 'backdoor' access to health records despite opt-out, says MP, The Guardian,
http://www.theguardian.com/society/2014/feb/06/police-backdoor-access- nhs-health-records

GPs revolt on patient records: Growing anger at NHS plan to harvest private data , Daily Mail, 5 February 2014
http://www.dailymail.co.uk/news/article-2552651/GPs-revolt-patient-rec ords-Growing-anger-NHS-plan-harvest-private-data.html