Discovery on 91.5FM and produced by the BBC in London looks into Patients whom are setting up their own clinical trials in an attempt to overcome frustrations with the existing medical systems. But is this going too far?
Many patients are frustrated by the time is takes to develop new drugs, the ethical barriers to obtaining clinical data, and the apparent indifference of the medical profession towards more obscure diseases. But now, patients are setting up their own clinical trials and overturning the norms of clinical research.
Vivienne Parry discovers that patient-run trials are on the rise, as greater access to medical data allows more patients to play research scientists and medics without any scientific training. Patients lie at the heart of clinical research – providing the test subjects, without which the trials could not take place. Yet there is often a lack of transparency about their own health, what pills they’re taking and whether they are actually doing them any good. Even after the trial is published, they’re left with little understanding of whether the treatment could work for them â€¦ and licensing is usually years away.
It’s perhaps hardly surprising that patient networks have sprung up to redress the balance. Much of this current patient-led research now takes place through online communities, with activists demanding more say in their treatment.
Vivienne Parry looks at some examples of patient-led research which have challenged the medical establishment. She also asks how far this can go and whether patients should be prevented from experimenting with procedures or drugs that might kill them.
Discovery produced by the BBC in London is available on 91.5FM and online at Phuket FM Radio and free to download mobils apps from IPhone, Android and Google Play and is transmitted at 8:30AM on Saturday and Sunday..