Who gets studied? The demographics of pain research

You might cynically guess that research probably isn’t exactly producing a lot of data about women and racial/ethnic minorities … but you’d only get half a gold star for that guess.

Science tends to focus on “subjects of convenience,” the kinds of people that are easier to study. This came up in a recent post (“A potent link between pain and lousy sleep…regardless of your budget.”), so today I thought we’d dig a little deeper, with the help of a brand new paper in The Journal of Pain by Boyd et al., who studied who gets studied in chronic pain trials. Science about science!

The first thing science has to say about this is that science often doesn’t say who it’s studying: many trials don’t report demographic data, even though they are really supposed to. They just don’t even mention it! The researchers don’t know, or they aren’t telling. Boyd et al.’s report card on reporting was disappointing: specifically, in 500 American clinical trials for chronic pain treatments since 2007, only 37% reported whether or not the subject were older adults, 37% reported ethnicity, and 54% reported race.

Happily, sex was reported by 100% of trials … but that doesn’t necessarily mean they studied women! It just means the papers said whether or not they did.

So did they? Who actually got studied? Some of this does fit cynical expectations, but not as badly as I feared, and there are a couple pleasant surprises. For instance, there was “equitable representation of older adults.” That is, the proportion of study subjects who were older matched the proportion of older adults in the population.

And women? Women were actually over represented! Women are 51% of the population, but 68% of study subjects. This is much higher than I would have guessed. But — important caveat — this doesn’t remotely mean that women’s health is what’s being studied (and it’s probably not).

And now for the shocker: racial and ethnic minorities were all somewhat under-represented! Imagine. It’s not as bad as I expected, but it’s not great. The most poorly represented large demographic group? Asians.

And how about queer folks of any kind? Just no reporting at all. And I mean not even the absence of reporting was reported! Just not even on the radar … so effectively zero representation in chronic pain research.

The situation could be completely different in other parts of the world. And, if all the trials had actually told us who they studied, the representation data might change quite a bit — maybe even a lot, but there’s no way to know.

Boyd et al. concluded that both reporting and representation, although improving, continues to be lousy despite efforts to improve the situation, and specifically “Black, Indigenous, and People of Color (BIPOC) remain underrepresented in clinical pain trials.”

This paper has now been cited in the PainSci library article, Chronic Pain and Inequality.