Thread by @Dr2NisreenAlwan

I invite my fellow researchers to reflect a bit on why they might consider someone with a lived experience of a health condition researching it more biased than someone without.

A short 🧵
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I’ve researched pregnancy for many years & not come across anyone accusing me of bias or conflict of interest because I’ve personally experienced pregnancy multiple times. When I got #LongCovid this became an issue for some. ‘Nisreen, are you here as an academic or patient?’
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Experiencing pregnancy & childbirth gave me important insights when studying them. However, other researchers (particularly junior) who experienced mental or physical health conditions & became passionate about studying them may feel compelled to hide their lived experience.
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If you’re thinking ‘of course that would affect their research objectivity’, I challenge you to think differently. There is NO complete objectivity. If you have no lived experience of a condition that doesn’t make you objective by default.
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I’m not talking about financial conflict of interest here. I’m talking about human nature. To varying extents, we all project our beliefs & experiences on what we do. Nobody’s totally objective. Because we all have lived experience over our lifecourse that shape our thinking.
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If I’m researching a condition that I haven’t experienced I might not be able to ask the relevant questions or miss relevant aspects in the study design or analysis, that’s why we involve patients in research. But that’s not all.
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I might also unconsciously shape my research to bias it against patients either because I haven’t thought of crucial perspectives and details to those living with the condition, or because I’m projecting beliefs and convictions I’ve formed from other irrelevant experiences.
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Of course if I do have lived experience of what I’m researching I should never consider it enough to inform the research. I must seek more diverse experiences that may be different to mine. But why would a researcher with no lived experience be considered less biased than me?
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We need to talk about this. We need to write about it and have open debates, consensus and even guidelines, but please let’s stop the stigma. Science is human. It doesn’t serve anyone to deny this.
End
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