Patient power is on the rise. But is it rising too far? Frustrated by the time it takes to develop new drugs, the ethical barriers to obtaining clinical data or the indifference of the medical profession to obscure diseases, patients are setting up their own clinical trials and overturning the norms of clinical research.
A DIY clinical trial sounds like a joke – and a dangerous one at that. But as Vivienne Parry discovers, it's real and on the rise as greater access to medical data allows more patients to play research scientists and medics at their own game.
Patients lie at the very heart of clinical research – without them there is none. Yet they come way down the food chain when it comes to transparency about their own health, blinded as they usually are to what pills they are taking and whether they are actually doing them any good. Even after the trial is published they are left with little understanding of whether the treatment could work for them and licensing is usually
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