Don’t tell the patients we do trials – they’ll all want one…

You get to hear lots of uplifting stories about clinical research, and meet some very inspiring people, but just occasionally you come across something that just puts a downer on your day.

One such experience I had recently was talking to some communications leaders from NHS land.  All highly competent professionals, working in complex organisations, often witihin considerable budget constraints.  Nonetheless, given the milieu in which they work, one could be forgiven for thinking that they would be pretty “on board” with things that impact positively on patient choice, improvements to treatments, and responding to what patients say they value – clinical research opportunities, in other words.

So it did surprise me to hear that these communications people don’t see it as their job to make patients aware of the clinical research agenda.  In fact, they actively don’t want to draw attention to research in case it actually might stimulate demand, and cause more patients to ask for opportunities to participate in clinical trials.  And if THAT happens, NHS Trusts might have to respond by making sure they do actually engage in clinical research across all therapy areas, and not just the “biggies” like cancer.  

I had rather assumed that was exactly the point, but clearly that is not a view that is universally shared.  Of course I understand there is reputation risk in creating a demand you really can’t service, but is that an excuse to do absolutely nothing?  Makes me even more determined to publish the results of our “mystery shopper” campaign in the New Year, where we expose exactly who is promoting research opportunities to patients (as the NHS Constitution says all Trusts should do) and – perhaps more importantly – who isn’t.   A national newspaper has already indicated it is interested in the results of this exercise, so perhaps that will convince the doubters that they should think again about making research opportunities actually visible to patients.


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