A special club

iStock_000051302460_LargeClinical trials investigate many new drugs but also evaluate procedures and physiology this. Not everything has to involve new medicines and a wealth of knowledge has accrued over the years this about all aspects of human physiology and psychology.

But this could be done better. We are not getting the best out of either the patients or the clinical trial investigators. Patients are choosy and want to be more than passive subjects, providers of data, and little else. But just for a second imagine if you turn the rules of human clinical trials on their head. Imagine that you took doctors out of the equation completely. Imagine if you left patients to investigate what they found interesting. Imagine if those patients then designed, executed, analysed and interpreted their own trials. Imagine if that data was owned by the patients and shared by them individually and collectively with whosoever they pleased. If you can do all of that, then you’ve just imagined the Parkinson’s Movement Research Club (PMRC).

Sound interesting? Let me tell you a bit more. PMRC was founded in the middle of 2014 as a means of allowing patients to take a more active and personal role in research – one in which they would call the shots. In other words patients would be not only subjects in the experiments but also the investigators. When you start with that premise, you are already over the first hurdle of engaging patient interest. Then you invite patients to decide what area of research interests the most and you design protocols in conjunction with other patients.

To the best of my knowledge, this has never been done before.

Obviously there is a limit to the kind of experimentation you can do. Let’s face it, we’re not going to be doing DaTscans on each other or analysing biological samples. But you can investigate gambling behaviour, temporal perception and the individual senses using technology little more complicated than rulers, stopwatches and a pack of playing cards.

Does this work? Are patients really that interested in doing research on themselves? Let me answer that by telling you that, last Friday, we conducted our first multicentre, double-blind, patient designed and executed trial. 67 patients and controls at sites in Britain, Belgium and Canada took part. And in a single fun day, we generated more meaningful data than most conventional clinical trials, can achieve in a year. So yes, we think this is exciting. Patients really are doing it for themselves.

 

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