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UK National Health Service Sitting On Potential Treasure Trove of Data

BY Jessica McKenzie | Thursday, October 17 2013

Make room for the data (Wikipedia)

We live in a world in which data is so valuable some people compare it to the Crown Jewels of the United Kingdom. The data in this case is the vast stores of patient information held by the U.K.'s National Health Service. One of the world's largest public health systems, the NHS serves more than 50 million people. Those 50 million plus medical records are being moved to a new central database to facilitate better healthcare for patients, regardless of where they go to receive care. The central database could also be a treasure trove of data for researchers, if patients acquiesce to sharing.

“The potential crown jewels in the UK are primary-care data that have been electronic for decades and have been coded for decades and have wide population coverage, nearly 100%,” Harry Hemingway, director of the Farr Health Informatics Research Institute at University College London, told Nature. The Institute was established this year with funding from the UK Medical Research Council to study public medical data.

Potential is really the key word there. Some privacy advocates are encouraging patients to opt out of the data sharing. Phil Booth leads the campaign medConfidential, which opposes the government's move and successfully campaigned to give patients the right to opt out. He told Nature that patient privacy will inevitably be compromised and patients will lose faith in both research and the NHS.

Prime Minister David Cameron worked to change the NHS constitution to make anonymized patient data available for research.

Back in December 2011, Cameron said:

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. 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.

Critics have countered that he is putting commercial interests, like the drug companies he hopes will flock to the U.K. once they have access to such a large cache of patient data, ahead of patient privacy.

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