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Tamiflu open data campaign

9 Nov, 12 | by BMJ

The website Scribd describes itself as the “world’s largest online library,  a place to read, publish, and share written documents.”

In March this year Peter Doshi, a post doctoral fellow at Johns Hopkins University, sent the BMJ a link to a page displaying corresondence with the US Food and Drug Administration, urging it to investigate CellTexTherapeutics Corporation and RNL Bio.

Doshi wondered if the BMJ might be interested in launching a similar online campaign as part of its drive to persuade drug companies to publish the full data from clinical trials.

He and colleague Tom Jefferson had been corresponding with Roche since September 2009, urging them repeatedly to give doctors and patients access to the full data on the flu drug oseltamivir. Their campaign was the subject of a 2010 investigation, published in the BMJ.

In December 2009 Roche told the journal it would make full study reports on 10 trials available to doctors and scientists, but has yet to do so.

Jefferson and Doshi had also had lengthy email exchanges with the World Health Organization and Centers for Disease Control and Prevention. Putting these in the public domain would help persuade the company to make the data available, they felt.

Over the summer the open data campaign website, bmj.com/tamiflu, took shape. It uses the same functionality as BMJ article responses. All the correspondence is loaded as jpegs in chronological order, giving readers the opportunity to see what was asked for, and when, and how the various organisations responded. There is also an opportunity for readers to submit their comments by clicking the “reply to this correspondence” button.

The site’s official launch was last week and followed by an announcement by health minister Norman Lamb to meet academics to discuss access to data from clinical trials.

The meeting took place this week. Roche also responded this week by issuing a reactive media statement disputing the version of events described on bmj.com/tamiflu. You can see this statement, and the Cochrane Collaboration researchers’ response, at this link

David Payne is editor, bmj.com

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