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.

I have researched maternal health and pregnancy for many years and have not come across anyone accusing me of bias or conflict of interest because I have personally experienced pregnancy multiple times. When I experienced Long Covid, it seems this became an issue for some.

I remember being invited to speak at scientific events and getting asked beforehand whether I was speaking as a patient or a scientist. It seemed unfathomable for some people in the scientific and medical community that I could be speaking as both. Surely, this is not a rare occurrence. Researchers may have previously shied away from declaring both identifies due to the stigma attached to that perception of bias.

Experiencing pregnancy and childbirth gave me important insights when studying them. However, in pre-pandemic times, other researchers (particularly junior) who have experienced mental or physical health conditions and became passionate about studying them may have felt compelled to hide their lived experience for their research to be taken seriously.

If you are still reading on and you are now thinking “of course having a health condition would affect research objectivity”, I challenge you to think differently. There is no complete objectivity. If you have no lived experience of a condition that does not make you objective by default.

I am not talking about financial conflict of interest here. I am talking about human nature. To varying extents, we all project our beliefs and experiences on what we do. Nobody is totally objective, because we all have lived experience over our lifecourse that shape our thinking.

If I am researching a health condition that I have not experienced, I might not be able to ask the relevant questions or miss relevant aspects in the study design or analysis. That is essentially why we involve patients in research. I might also shape my research to unconsciously bias it against certain aspects of patients’ journey, either because I have not thought of crucial perspectives and details to those living with the condition, or because I’m projecting beliefs and convictions I have formed from other irrelevant life experiences.

Of course, if I do have lived experience of what I am researching I should never consider it enough to inform the research. I must seek more diverse experiences that may be different to mine. These are essential considerations for all of us doing health research. I wrote more about this in my recent Nature Reviews Immunology article Lessons from Long COVID: working with patients to design better research. However, I ask you to reflect on this: why would a researcher with no lived experience be considered less biased than me?

What I am saying is that we need to talk and write about this. We need to have open debates, consensus and even guidelines around researching own lived experiences, but please let us stop the stigma. Science is human. It does not serve anyone to deny this.

This blog is based on a Twitter thread by Dr Nisreen Alwan. Image credit @ClarenceHouse on Twitter.

Researching own lived experience: break the taboo! by Dr Nisreen Alwan

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