Recent years have seen an increasing recognition of fraud, deceit, and other maleficence in scientific research, including medical research. The extent of this is truly frightening and has led to increasing international efforts to detect and address it. As of September 2020, the site Retraction Watch listed over 24,000 papers in its database, many of which were retracted due to deliberate fraud. It is unknown how many individuals, who received medical care based on these bogus studies, have been harmed as a result. I try not to think about it.
Yet there are other groups who have suffered harm at the hands of medical research—not deliberately fraudulent, but rather due to poorly conducted research. As far as I can tell, these people have gone completely unnoticed and unrecognized. There is a good chance that you have seen them but didn’t really notice. Let me explain.
If you, like me, have an interest in practicing evidence-based medicine (EBM), then you have likely consulted references such as BMJ Best Practice, Bandolier, The Cochrane Library, or one of the many POEMS (patient-oriented evidence that matters) databases available online. Often, the review of a particular topic will go something like this:
“Our search of the databases X, Y, and Z yielded 20 studies and clinical trials relevant to this topic. Ten were considered methodologically unsound, three were underpowered, and two used inappropriate statistical analysis, leaving five for consideration in this review…”
There—the innocent victims passed before your eyes, but did you actually notice them? They were the patient volunteers in the 15 rejected studies, studies that were discarded in a flash, in the blink of an eye, into the waste can of worthlessness.
How many hundreds of people gave up their time to participate as willing victims of these ultimately useless studies? Time, perhaps discomfort, blood, or other bodily fluids—all given by individuals who had been told that this would either help them, contribute to medical knowledge, or perhaps one day ease the suffering of others and save lives. But they were deceived because the studies were improperly designed or conducted.
I don’t know why, but I spotted these unfortunate individuals the very first time I ever consulted an EBM source. They just leapt out at me: wait, what? Fifteen worthless studies? I was shocked. Why were so many clearly improperly designed or executed? Was someone doing something about this? What about all the people who participated as subjects? I almost couldn’t believe what I was reading. I envisioned a member of the public who had proudly contributed to one of these studies, feeling she had made a worthwhile contribution to her fellow women, but sitting on her left shoulder, there is a little imp whispering in her ear, “psst!…it was all a waste of time really.” What would study subjects think and feel to learn that the EBM experts had just consigned their study to the trash can?
I have never seen the plight of this group acknowledged. No one has ever apologized to them. They have never been compensated for the fact that they wasted their time. And what makes me even more cross is that there is no comeback for those who designed and ran the trials and studies. No punishment, rebuke, or scolding. There ought to be a list of names somewhere, a list of shame, of those who performed useless studies. Those doling out research money could use this list to assess proposals for further research. Money should not be given to bad researchers.
Which brings us to another unseen group. Much research is funded by charities. Ordinary folks give their hard-earned money to these charities with the understanding that it will go to finance good medical research, not be flushed down the drain because the study was poorly designed or executed.
The bottom line is that bad medical research harms unseen people, both the study subjects and those who finance the research through charitable contributions. The next time you research a topic using EBM, please spare a thought for them. Don’t let me be the only one who notices.
Martin C. Young is a pediatric endocrinologist.