British Health Open for Research

Giving researchers access to the health records of 52 million people in England could prove invaluable to biomedical scientists.

By | September 12, 2012

Amanda L. Kilpatrick" > Files of inpatient records at the Naval Medical Center in San DiegoWikimedia, Amanda L. Kilpatrick

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.)

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Avatar of: FJScientist


Posts: 52

September 12, 2012

The success of the dataset will depend on the details that physicians may enter (i.e., must be a series of standardized terms that can be searched after entering), the consistency of the physicians in entering those terms, the variability in which tests were requested on which patients and the level to which patients opting out of the database will be random or disease-associated. Even with those variables, the availability of a large comprehensive dataset likely will help uncover advances that previously have been cloaked in statistical noise. This could be the biggest news in the last few years.

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