Concerns over plan to boost pharma by releasing NHS data
Voices join chorus of disquiet
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Earlier this week the Government announced proposals (40-page / 2.1MB PDF) to change the NHS Constitution so that information stored about patients would be automatically shared with life sciences researchers via a new anonymised database unless patients elect for their details not to be included.
While welcomed by the life sciences industry as a boost to research, the proposals raised concerns about the use of patient data.
The Royal Pharmaceutical Society said that patient data had helped researchers make key medical discoveries, such as the link between lung cancer and smoking, in the past.
"The public must be assured that the release of data is controlled by robust processes and legal and ethical oversight in which the patients themselves are involved," Jayne Lawrence, chief science advisor at the Royal Pharmaceutical Society, said in a statement.
"All of us in the science and research community need to communicate to the public a vision for research in the UK which is centred on improving patient care. This will ensure we leave a legacy of improving health for the future," Lawrence said.
Prime Minister David Cameron has insisted that patients' privacy would not be compromised by the patient data-sharing plans. The Government has said that the information would help advance medical research and benefit patients.
"Let me be clear, this does not threaten privacy, it doesn't mean anyone can look at your health records, but it does mean using anonymous data to make new medical breakthroughs," Cameron said in a speech detailing the Government's plans, according to a report by the BBC.
"The end result will be that every willing patient is a research patient and every time you use the NHS you are playing a part in the fight against disease at home and around the world," Cameron said.
Academic Paul Ohm, Associate Professor at University of Colorado Law School, told Out-Law.com in 2009 that research had shown that it is possible to use anonymised data to identify individuals. He said at the time that misplaced trust in anonymisation had been enshrined in privacy legislation.
"Virtually every privacy law allows you to escape the strictures and requirements of the privacy law completely once you've anonymised your data," he said. "Every policy maker who has ever encountered a privacy law, and that's in every country on earth, will need to re-examine the core assumptions they made when they wrote that law."
Ohm said at the time that, in some fields of research such as health, it would be possible to open up much more data than is currently permitted as long as access to the information was controlled.
"We can't trust technology any more but at the same time we don't want to keep this information from researchers. So my solution is that we shift our trust from the technology to the people," he said. "We write down the rules of trust among health researchers … [we say] you can get my data but only on a need to know basis," he said. ®
COMMENTS
for private profit?
I'd be willing to let my anonymized medical info be used for non-profit (especially academic) medical research, but not for private profit, and certainly not for patents. Results obtained from NHS data should belong to the public.
How anonymous is anonymous?
In principle it's a great idea to make use of the vast amount of data. It could help us all. But to be worthwhile it can't really be anonymous. For the data to actually be useful, surely researchers will need as much of it as possible.
They're going to want a postcode attached to see if location affects the disease a population gets or it's eventual outcome.
They're going to want to know age and sex as that has a huge bearing on what you get and if you survive it.
They're going to want to know ethnicity as some groups have much higher incidence of some problems than others.
Number of kids I've had may change my odds of some cancers
The medical history of a patient's close relatives is important to see how that changes the likelihood of getting a disease (breast cancer for example)
So if you know my medical history, age, sex, location, ethnicity, number of kids, and can link my to my family's medical history, just how anonymous is my record? It isn't. So why pretend real research can be done with anything other than the full details, but with the patient name and address crossed out.
So to do this much needed research we have to find someone we can trust with the raw, unexpurgated information about us all.
Ah. Any suggestions?
(Posted as anonymous, but we all know it's not really).
Surely there's no need for all this....
... all the private pharma companies need to do it post a body in each of central Londons' parks and have one or two riding the central London tube/bus routes and eventually they'll pick up a laptop with patient data, lost by a civil servant.
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