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When negative data fails patients by publication omission

By Anthony King

Source: Euro Scientist

25 February 2015

Publication of negative trial results are as valuable as positive ones for healthcare professionals

Half of all clinical trials never see the light of day. The complicit combination of keen clinicians, medical journals and bottom-line driven pharmaceutical industry has not served patients well. All clinical trials must be registered and published in full if healthcare professionals are to make a fully informed decision of what care to provide patients. Yet it is not just stringent regulations—or indeed their enforcement that are needed—but rather handing ownership of clinical data back to patients themselves.

Millions of patients took part in such trials thinking that they were helping others, but they were misled. If a drug company does not like the results of a trial, it can hide them from doctors and patients, so that a drug’s true worth or side effects remain hidden. “This situation is a massive betrayal of patient trust,” says Sile Lane at UK science advocacy group Sense about Science, located in London.

“The idea that people are volunteering for research, putting themselves at risk, and then that is not being used by anyone or being made available to researchers is just disgusting,” says Lane. Her organisation is involved in the All Trials campaign – this is also led by the Cochrane Collaboration, a global independent network of researchers, professionals, patients, carers, and people interested in health, James Lind Initiative, a patients, carers and clinicians partnership and open access journal PLOS and in the USA by Dartmouth’s Geisel School of Medicine and the Dartmouth Institute for Health Policy and Clinical Practice. The AllTrials petition has been signed at the time of writing this article by 82,682 people and 540 organisations.

Meanwhile, the current situation leaves a doctor . . .

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Read more: When negative data fails patients by publication omission — Anthony King | Euro Scientist

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