Improving understanding of and feeling towards research in those on the receiving end…

I was motivated to write this piece by a recent encounter with an old acquaintance whom I hadn’t seen for some time. Naturally, before long, talk turned to work and how we were both getting on in our respective jobs. As I explained my current work situation, he revealed that his elderly mother is sadly suffering from cancer at the moment and was offered the opportunity by her consultant to take part in a trial, which she had accepted. In itself, this didn’t present a particularly remarkable situation: this happens frequently worldwide. What has got me thinking, though, is what my friend spoke about afterwards.

The overwhelming feeling that he had was one of confusion and uncertainty, albeit hidden from his mother. He couldn’t tell me very many details at all about the trial; not because he had forgotten them but because he simply hadn’t been given a huge amount of information in the first place. Whilst there are variations, inconsistencies and human individuality in the way one doctor will operate compared to the next, it suddenly struck me that this could be an internal struggle faced by many relatives, friends and subjects themselves when faced with the world of clinical research. My friend had stoically placed his trust in the medical team and their years of training and experience as they undertook the care of his mother, without ever taking the time to satisfy his urge to know exactly what it is that this trial entailed and, more broadly, how wider clinical research is generally conducted.

At a time when we frequently hear how stretched our health system is and, indeed, see evidence of this stretching, it may seem naïve to suggest that there should be more done by medical staff in a world in which so much is expected of them as it is. I would prefer to think of these words more as philosophical musings than the outright identification of a potential problem and a clear-cut solution. I fear I can offer no answers as I haven’t entirely made up my mind as to the issue at hand, if there is one at all. Perhaps it is best that the professionals tasked with the running of these trials are left to do so without too many clued-up relatives sniffing around as they work? On the other hand, I surmise that resources to highlight the process of a trial right from conception to delivery would improve the relationship between patients, patients’ associates and the medical staff.

Based on this conversation with my friend, a useful move towards demystifying clinical research would be a resource to clear up how trials come about and how new products are taken to market. He wasn’t unique in not even knowing about the existence of CROs, let alone what we do. Few people are ignorant enough to believe that pharmaceutical companies just deliver new drugs to hospitals and ask that they are prescribed, but it is unlikely that many people think about just how clinical research is delivered in the real-world. The majority of society is prepared to take many readily available medicines for a variety of ailments without stopping to think about how these drugs were developed. Something as commonplace (and perceived as very safe by virtue of its popularity) as paracetamol was once a new drug with an uncertain future. A one-stop resource explaining how clinical research is generally conducted would, I think, make for a more relaxed and confidence-inspiring experience for those at the receiving end and their friends and family.