Starting this month, biomedical researchers will have access to an unparalleled new resource—the health records of everyone enrolled in the United Kingdom's National Health Service (NHS), unless the patients opt out. The records, which will be made anonymous before being opened up to the scientific community, could revolutionize medical research in Britain, The Guardian reported, allowing scientists to probe for causes and consequences of a vast range of diseases, as well as the effectiveness and potential dangers of numerous drugs.
With patient records going back 4 decades, the NHS has already proven a valuable source of data for previous studies. The records have revealed, for example, evidence that linked power lines and childhood leukemia and refuted the autism-vaccine link that launched the anti-vaccine movement. Such research required many man hours to mine the NHS for the needed data, however. The new initiative, launched by NHS National Institute for Health Research and the Medicines and Healthcare Products Regulatory Agency, will make such large-scale studies much easier to conduct. Known as the Clinical Practice Research Datalink (CPRD), the service will pull the relevant records for you—assuming you get approval by an independent scientific advisory committee.
"The current system can be characterized by inconsistency, confusion and caution," Andrew Morris, chief scientist to the Scottish government, told The Guardian. "If we want the UK to be the home of world class science, we need to sort these issues out."
The system isn’t free, however: the UK government will charge private companies £50,000–£100,000 ($80,000–$160,000) for each study, and about half that for academics. The government has patient protections in place. In addition to anonymizing the data, drug companies will not be able to use the CPRD for marketing purposes, only research. And all projects using the service must be made open access.
Eventually, the CPRD plans to add other data, including pollution information, social care records, and data from research endeavors like the UK Biobank, a long-term study following the health of a half a million patients, as well as records from the health care systems in Scotland and Wales.
(Hat tip to GenomeWeb.)