Beginning this month, the UK's National Health Service will open up all patient records in its system for medical research, The Guardian reports.
Under this model, all patients enrolled in the NHS system — around 52 million people — "will become a research subject by default, their anonymized records being made available for study, unless they opt out," The Guardian says.
The NHS National Institute for Health Research has partnered with the Medicines and Healthcare Products Regulatory Agency to launch a new service called the Clinical Practice Research Datalink that will manage the use of medical records for research projects. Scientists who want to mine information in patient records must register through CPRD for approval by an independent scientific advisory committee. If approved, CPRD pulls the required records, performs the scientist's query, and delivers the anonymized results.
The UK's Foundation for Genomics and Population Health notes that the new model will require changes in the NHS constitution "to allow presumed patient consent."
According to The Guardian, the new system isn't just about improving healthcare through improved access to patient records: The UK government plans to charge companies for access to the data. "The MHRA will charge industry double the academic rate, with private companies paying about £50,000 to £100,000 [$80,000 to $160,000] a study, depending on how much record linking needs to be done," the paper reports. "The system can only be used for medical research, so drug companies cannot use CPRD for marketing, for example, by tracking down GP surgeries that are not prescribing their medicines."
In addition, all projects that use CPRD data "must be made public, usually through published journals."