Firstly. And I state this most emphatically. I am not an expert on gender. In fact, the more I learn the more I realise I have so much more to learn. I do, however, observe and take note of certain things. I note that when I approach a patient to collect demographic data I am often given only 2 options. Male or Female. Maybe, just occasionally, “Prefer not to answer” or “Other”. I note that quite often we just make a snap judgement and tick one of the boxes and move on. I note that some people don’t identify as either and I wonder how gender inclusive our research actually is.
I’m not talking here about those studies specifically set up to look at gender issues. I’ve never been involved directly in gender research. I have, however, been involved in what must be tens if not hundreds of clinical trials, all of which without exception collect information on gender. Sometimes, inclusion in a study depends on it (e.g. studies that only recruit males); more often than not it is part of the demographics.
Data collection in quantitative research is as slick as possible. Precise. Clean. Every single piece of data collected is intentional. “Other” or free text is not always helpful (so I’m told!) when it comes to statistical analysis. But what we are missing when it comes to this most basic of demographic values? If we limit ourselves to collecting only the binary, how does this affect the accuracy of our analysis and in turn what impact does this have on our results? Are we missing important scientific data simply because we are not collecting this information?
How should we go about determining gender in our participants? Well, maybe we shouldn’t. And by that I mean maybe we, as heath care professionals, shouldn’t be ticking those boxes. Gender identification is surely down to the individual. How many times have we ticked the “Male” or “female” box because we have made an assumption? How many of us ask the person in from of us to tell us – maybe even handing them the CRF at this point to indicate for themselves? If we want to get this right, surely the best person to tell us is the patient; we can’t always assume that this information is available in the notes.
There are lots of questions I haven’t got answers to – how, for example, do we capture the full range of gender identification and what impact will this then have on our studies? How far do we go? Should we be pragmatic and collect only the biological sex of people? For some studies this is important to the point of inclusion/exclusion. If so, does this need to be categorised differently from the demographic identity of gender?
I’m not sure I have an answer.
I do wonder though, when we wear our rainbow NHS badges, whether we might need to give this a little more thought. What do non-binary participants expect of us when it comes to research? Do we need to have patients ambassadors specifically to advise on gender issues in research?
What do you think? #GenderInclusiveResearch