For many years, doctors, scientists and researchers have urged that clinical drug trial data be shared to accelerate medical advances in treating multiple diseases. But two years after free patient data became available in a major data-sharing project, the biggest surprise is how little it is being used.
“Given the risks patients are taking and given the data being collected, there’s an ethical imperative to make maximum use of it,” said Brian L. Strom, chancellor of Rutgers Biomedical and Health Sciences. “That’s why it’s frustrating that more people are not using it and we don’t fully know why.”
Strom is lead author of a paper published today in the New England Journal of Medicine that explores the unexpectedly low usage of the free data. Since GlaxoSmithKline began making anonymous patient data available in May 2013, 177 research proposals were submitted and access granted to 144 by an independent review committee headed by Strom. No applications were denied; 33 were withdrawn after requests for more information.
GlaxoSmithKline funded millions of dollars to launch the data-sharing system and make data available from 1,500 of its drug trials. The clinicalstudydatarequest.com website was set up in 2014 and data from other pharmaceutical companies was added, bringing the total to 2,800 trials from 13 companies, including Astellas, Bayer, Lilly, Novartis, Roche and Sanofi.
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