YOUR MEDICAL RECORDS FOR SALE!
You may have received a leaflet from NHS England called “Better Information Means Better Care” 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 many critics argue its an infringement of your privacy. Heres information the leaflet omitted, that may make you think whether to opt out.
The NHS leaflet doesn’t tell you much. This may suggest, as GP Dr Marie-Louise Tidmarsh, says that patients are being misled about the so-called confidential nature of the data extractions.
So here’s some information you wont find dropping through your letter box:
Under the Health and Social Care Act 2012, GP’s are forced 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, otherwise, your consent will be implied. There’s opt out forms at GP’s practise’s.
Data is categorised as red for identifiable to you, amber, for pseudomynised with access to your name, date of birth, postcode, NHS number, and green for totally anonymous data.
GP, Dr Neil Bhatia, who is opting all his patients out despite this breaking the law, say the NHS omits information. How can people make an informed choice to opt in or out, if they aren’t aware of both sides?
Your Caredata record will be created, but it isnt 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, to be available to institutions, universities, businesses, insurance and drugs companies.
Also your physical and mental health, your drinking and smoking habits, will be available, supposedly for health intelligence, health improvement, audit, research, and planning.
But even the HSCIC says it relies on trusting that access is for the right purposes. Can we really trust these third parties with our personal information?
Even Mark Davis, from HSCIC admits that there’s a “small risk” that patients could be identified as pseudonymised records can be matched up with other records that companies may have, and of course, just searching on the internet.
Critics are growing: MPs, GP’s, medConfidential, OpenRights group, and many more.
All cite concerns that once uploaded, there’s no way of knowing who has your data or how its used.
Past examples of Government and Companies data leaks are of concern.
Professor Julia Hippisley-Cox of the NHS Confidentiality Advisory Group, says that third parties access “ left serious unanswered questions about patient confidentiality “
Campaigner, Phil Booth warns that “ the people in charge now admit the range of potential customers for this…centralised database ….is effectively limitless.”There’s concerns medical records could be used for commercial purposes, or result in people being discriminated against by insurers or employers.
Even the HSCIC admits that this about NHS privatisation: 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.
The Royal College of General Practitioners and the British Medical Council support it. However, a survey by G. P’s magazine, Pulse, found over 40 percent of 400 GP’s intend to opt out, and many oppose it. Dr Peter Swinyard said that GPs were worried patients would lose trust in GP consultations.
An anonymous GP has opted out all of his patients despite breaking the law.
HSIC refuses to disclose the cost, but estimates are approximately 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!
Since Jan 6th, Over 2400 people have called an NHS hotline number complaining, with many writing to their MPs. MP Roger Godsiff, tabled an Early Day Motion in the House of Commons, http://www.rogergodsiffmp.co.uk/news.php
said: “I have no faith in Government …to guarantee anonymity…. I believe patients themselves ..should determine when and where their medical information is used and for what purposes”.
There are plans to release fully identifiable data at some 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?
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.
And 9Nu4 code to stop HSCIC releasing identifiable data from your GP and any other sources, and cannot be overrided by section 251 unless there’s a civil emergency.
To be on the safe side, ask hospitals and other medical services to opt you out as well.
GP’s will still have to send data about you by law, but it will be anonymised and will not be CareData.
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 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. Author F.Anderson