Why clinical research should be freely exchanged

Adam Dunn & Enrico Coiera | The Sydney Morning Herald | May 4, 2012

[O]pen source has transformed into a thriving $300 billion-a-year business, supported by a programmer community that believes all information should be ‘‘free’’. The situation is very different in healthcare. Doctors and consumers rely heavily on evidence-based research to guide their decisions. Yet the clinical trials that generate research findings happen mainly behind closed doors – or more accurately behind the corporate walls of pharmaceutical companies.

Perverse industry incentives mean that many clinical trials are designed to market drugs rather than answer the questions that doctors and patients rightly ask. Trials that do not produce the expected positive results often remain unpublished. When clinical trials are published, conclusions are sometimes massaged and the raw data that would reveal that – the result of treatment for individual patients – stays locked up.

Yet clinical trial data is a potential goldmine for us all. If researchers, doctors and patients were able to re-analyse and pool this data, there would be a whole host of questions that could start to be answered. One “hacker” solution is for the data to be pirated, but no one wins in this scenario. However, everyone could be a winner if clinical research data went open source.

Building a community where people freely exchange the “source code” of clinical trials should help close many of these gaps in research evidence, and this scenario may not be that far away...