Simon
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BMJ Blogs:Simon McGrath:
PACE trial shows why medicine needs patients to scrutinise studies about their health
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PACE trial shows why medicine needs patients to scrutinise studies about their health
Like all patients, what I want most from clinical research is treatments that work, not ones that merely look good on paper. As The BMJ has pointed out, patients are often faced with over-hyped treatments and an incomplete research base biased towards positive results.
These biases arise partly because of “publish or perish” pressure on researchers. By contrast, patients’ only concern is to establish what really works...
[discusses PACE eg
For years, patients have believed that the modest gains in subjective outcomes in this non-blinded trial were not matched by objective gains and that key analyses specified in the study’s original protocol were altered drastically once the trial was under way. Thresholds for “recovery” were lowered so far that 13% of patients already met the revised threshold for recovery of physical function before therapy.
]
We need a culture of open data, in which researchers engage with all reasonable criticism, whether from academics or patients.
Above all, what’s needed is to establish what truly works and what does not.
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