Interesting piece in today’s NEJM on data sharing and clinical trials and how meaningfully patients are involved.
Patients also said they wanted trial results to be shared with participants themselves, along with an explanation of what the results mean for them — something that generally doesn’t happen now. In addition, most participants said they had entered a trial not to advance knowledge, but to obtain what their doctor thought was the best treatment option for them. All of which raises some questions about how well patients understand consent forms.
Which reminded me of a powerful paper by the late David Horrobin in the Lancet in which, from the position of being a patient with a terminal illness, he challenged what many say:
The idea that altruism is an important consideration for most patients with cancer is a figment of the ethicist’s and statistician’s imagination. Of course, many people, when confronted with the certainty of their own death, will say that even if they cannot live they would like to contribute to understanding so that others will have a chance of survival. But the idea that this is a really important issue for most patients is nonsense. What they want is to survive, and to do that they want the best treatment.
I have always been suspicious of the ‘equipoise’ argument and terrified when I see participation rates in clinical trials as a NHS performance measure. It is bad enough that doctors might end up acting as agents of the state. But this is worse than shilling for pharma.
Thew NEJM piece also draws attention to people’s reluctance to share with commercial entities. What this tells you, is that many people view some corporations —pharma — in this instance as pirates. Or worse. This topic is not going away. Nor is the need for (commercial) pharma to finance and develop new drugs.