AsianScientist (May 7, 2012) – Australian researchers have called for the open sharing of clinical trial data in the medical research community. In their commentary published in Science Translational Medicine, they argue that doing so would eliminate bottlenecks and duplication currently plaguing medical research and lead to more rapid advances in the field.
Provocatively, they also propose that hackers should be role models for freeing up access to the “source code” of clinical trials – patient-level data. In the software industry, computer hackers have famously countered the economic and cultural motivations that drove closed source software and disengagement from user needs.
“Similar roadblocks plague the clinical evidence domain where, despite a rapid increase in the volume of published research, physicians still make decisions without access to the synthesised evidence they need,” said co-author Dr. Adam Dunn, from the University of New South Wales (UNSW).
The call follows a wider push for free, open access to academic publications and intellectual property rights designed to turn more university research into real-world applications.
Open source communities often out-perform their closed source counterparts, most notably in the software community where millions of programmers contribute code that can be used for free, by anyone.
The researchers believe that if the same principles were applied to medical research, bottlenecks, biases and self-interest currently hindering advances in the field would be largely removed.
“Clinical trial data is a potential goldmine. If researchers, doctors and patients were able to re-analyse and pool this data, there would be a host of questions that could start to be answered. But these meta-analyses are very uncommon because researchers and companies don’t like to share data,” said UNSW Professor Enrico Coiera, a co-author of the commentary.
“One solution, which has no support, is for data to be pirated. No one would win in that scenario. But everyone could be a winner if clinical research data went open source,” he added.
While there are technical challenges around building an open source community for clinical trials, including important considerations around privacy and data quality, the researchers believe that these would be easy to overcome compared to social and financial barriers.
“Most researchers want to hold their data as long as they can as the basis for publications,” said Dunn. “And unfortunately, pharmaceutical companies want to control the messages that are delivered to doctors and maximize profits rather than facilitate the cost-effective delivery of care.”
The commentary can be found at: Dunn et al. (2012) Learning From Hackers: Open-Source Clinical Trials.
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Source: University of New South Wales.
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