PATH as an open group

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Richard Lehman

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Nov 26, 2012, 4:32:37 AM11/26/12

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Dear All,

I set up PATH a year ago when I realised that the cause of open data access from human trials was likely to receive a massive boost from several sources:

a BMJ themed issue
Peter Gøtzsche's canvassing of the EU parliament
Ben Goldacre's forthcoming book
Tom Jefferson et al and their Tamiflu work exposing Roche's failure to fill the evidence base gaps
the Yale Open Data Access (YODA) project

In fact progress has been more spectacular than I dared hope. Several leading organisations, including the European Medicines Agency and the US Institute of Medicine, plus certain sections of the pharmaceutical industry, have now officially acknowledged the ethical imperative to publish all human trials, which I set as PATH's basic principle. Ben's book has been a tremendous and well-deserved success and has rocketed the issue to the top of the UK political agenda.

Here I must make an apology to the whole group. I had always thought of this as an open group and therefore as "owner" I set no limits on membership and did not set up any firewall for secrecy. I should have made this quite clear from the start and repeated the message from time to time. The purpose of PATH is open debate and the sharing of ideas and knowledge, and personally I would welcome input from sceptics as well as enthusiasts. In fact I do not believe that anything has appeared on this site that could not be shared openly; but if some members wrote assuming confidentiality then I am very sorry not to have spelt out the postion more clearly.

Personally I would prefer to keep PATH as it is. A few months ago I invited Ash Paul to join me as co-"owner" (in Google's curious terminology) as I felt I wasn't being sufficiently pro-active. I have been having a rather lively retirement from general practice, trying to handle too many diverse issues - all centred on the dilemma of how we can share dependable information with those we serve as health professionals. Our patients and the public come to us for clean knowledge, but we can only offer them muddy water, and then in insufficient quantities because a lot of it is hidden. At last we are beginning to address this disgrace. And it is not only a matter of calling industry to account - there is also a lot of work to do with academia, and with clinicians who happily accept the pervasive influence of pharma and paid "opinion leaders" in their lives. Ethics committees have also shown complacency and obstructiveness. We have a lot of work to do.