BBC Interview with Sir Iain Chalmers

abernard102@gmail.com 2012-08-20

Summary:

“As part of their ‘The Life Scientific‘ series, which has previously featured an excellent interview withJohn Sulston on open data and the Human Genome Project, the BBC recently broadcast an interview with Sir Iain Chalmers, founder of the Cochrane Collaboration, in which he clearly states the dire need for open data concerning drug trials and emphasises a need to focus on the research questions and outcomes that really matter to patients. He also emphasises how vital it is to publish the results of all trials to avoid an incomplete and biased scientific record which can lead to wasted resources following unpromising leads and compromises the safety of future trial participants... ‘This is not just a scientific disgrace but an ethical disgrace. Patients have suffered and died and resources have been wasted in both healthcare and research because people have not published what they should have published and that is tragic…We now have evidence that over 50% of trials go unreported...’ Sir Iain gives the example of an unreported study of a drug very similar to that used in the infamous TGN1412 trial at Northwick Park in the UK, which led to six volunteers suffering multiple organ failure. The suffering of the single participant in the earlier study who developed similar symptoms did not prevent others from the same fate because the data and report was not available. This message about complete reporting was echoed by Patrick Vallance of GlaxoSmithKline... Sir Iain’s work through the James Lind Foundation expands on this patient focus and he discusses questions such as why most trials registered for osteoarthritis of the knee are drug related when patients and their healthcare workers want research on surgical treatments, physiotherapy and knee prostheses... First of all you’ve got people asking questions that are of no interest to the punters at the end of the research pipeline... One way to help make this happen is to ensure that all research publications and data relating to clinical trials are available openly so they can be accessed by patients and by those able to make them more useful to patients. For OKFN affiliated projects related to patient access to information, see Who Needs Access? and Open Research Reports”

Link:

http://science.okfn.org/2012/03/02/bbc-interview-with-sir-iain-chalmers/

Updated:

08/16/2012, 06:08

From feeds:

Open Access Tracking Project (OATP) » abernard102@gmail.com

Tags:

oa.medicine oa.new oa.data oa.comment oa.uk oa.lay oa.pharma oa.okfn

Authors:

abernard

Date tagged:

08/20/2012, 14:43

Date published:

03/03/2012, 20:21