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Feature Patient Data

Medical data: does patient privacy trump access for research?

BMJ 2013; 347 doi: (Published 11 September 2013) Cite this as: BMJ 2013;347:f5516
  1. Adrian O’Dowd, freelance journalist
  1. 1London, UK
  1. adrianodowd{at}

Patient data are powerful tools for medical research, but, as Adrian O’Dowd reports, plans to increase access are raising questions about how to ensure privacy

A national drive to gather and store more information on patients—both medical and genomic—is under way. At the same time, researchers are on the brink of accessing individual patient data from the vaults of drug companies’ clinical trial records. But with this fundamental shift comes a new concern: how can we make best use of individual patient data without impinging on privacy? In the wider world, recent cybersurveillance scandals have led to a new nervousness about privacy. For patients the concerns are that their privacy is protected and that data are not used inappropriately or mischievously for the wrong reasons.

All three potential sources of medical data for research in the UK—a data service providing patient records from general practices and hospitals, data from clinical trials, and a NHS DNA database built from patients’ genomic information—are proving controversial.

Researchers currently get data from patient records mainly through the clinical patient research datalink (CPRD). The electronic health records given over are anonymised—patients’ names and dates of birth are removed and postcodes are obfuscated. Ben Goldacre, author and research fellow in epidemiology at the London School of Hygiene and Tropical Medicine, says: “In my day job I work partly on CPRD data—full electronic health records of every blood test, every prescription, every diagnosis—for observational epidemiology.

“Recently people have got a little bit worried about the government saying that it is going to exploit NHS electronic health records as a way of making money by selling them to industry to do research on.

“But, the GP research database has been around for a couple of decades and quite correctly, we sell that information to drug companies who use …

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