Just what is happening to our medical records? The government plans to collect them into a massive databank – supposedly anonymised, but that will be easily broken – and sell to anyone with a potential interest, from public health researchers to the pharmaceutical industry and even insurance companies.
This plan has generated a wave of opposition that has put the government on the back foot, and caused them to call a six month ‘pause’ in the process. This gives us time to organise a massive ‘opt out’ campaign. It sounds a tall order but the time, post-Snowden, is ripe.
The leaked news that NHS hospital records have been sold to the insurance industry is an example of the growing commodification, not of our bodies, but of information about our bodies. There is a busy market in such bio-information.
We have learned that if any of us has been a hospital patient, whether inpatient, outpatient or an A&E casualty, any time during the last dozen years our hospital medical records are among the 47 million sold to the insurance industry. The scandal is, so far as the government is concerned, incredibly damaging.
Unquestionably large databanks based on medical records offer tremendous opportunities to improve healthcare. But we the patients have never been asked whether we wanted to become guinea pigs and for what ends. Most of us, providing our confidentiality was assured and the research was to improve healthcare, would probably be happy to take part.
But with a government hell bent on making money, or rather helping its friends make money, the profit motive has trumped both our privacy and research which could improve our healthcare. Just who would want their medical records to be sold to the insurance industry, to be used to exclude some and increase premiums for others?
It was Blair’s government which initially proposed to sweep up all our health records into a central database. This automatically included every NHS patient. Never mind opting in, there wasn’t even the right to opt out. It was only after a fight, led by the Big Opt Out campaign, together with the pressure from the medical professions, that the right to opt out was won. The planned database became an IT disaster. IT firms made millions with very little to show for it.
Unsurprisingly, when the coalition came in they cancelled the whole project – only to resurrect it with a new name, care.data, after the pharmaceutical firms and their allies insisted that the massive database was critical for developing new drugs and thence economic growth… and their bottom line.
The right to opt out was recognised as key to public acceptability, and the coalition has allowed an opt-out clause. However the leaflet they sent out last month to every household announcing the data was going to be collected contained no opt-out form, merely suggesting that anyone concerned should consult their doctor. As if.
Meanwhile the scandals continue. The Tory MP – and GP – Sarah Wollaston has questioned how the entire NHS hospital patient database for England has been handed over to management consultants who have uploaded it to Google servers. Actuaries, pharmaceutical companies and private health providers have attempted to or actually obtained patient data. The six month pause is the government’s response.
If we don’t want our medical data to be commodified, to be bought and sold in the market without our consent, we need to opt out now and to persuade everyone we know to do the same. We need to insist on our right to give or withhold our bio-information, to give access to those we trust to use it to improve the effectiveness of healthcare while protecting our personal identity.
So – how to opt out? The easiest route is to go to Medconfidential.org, download an opt-out form letter and give it to your GP practice. It isn’t hard: do it.
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