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 🧵
1/9
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?’
2/9
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.
3/9
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.
4/9
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.
5/9
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.
6/9
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.
7/9
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?
8/9
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
9/9

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More from @Dr2NisreenAlwan

Jan 29
We have to admit that #LongCovid is incredibly difficult to study in epidemiological research. The oversimplification needs to stop because it’s damaging to patients & we know more about the nature of this condition now that we have to do better. Some points to consider:
🧵
1/7
One point in time assessments are next to useless due to the fluctuating nature of the symptoms and their triggers. Assessment has to be longitudinal if asking about specific symptoms, if not possible ask participants themselves about their *pattern* not symptoms on one day.
2/7
Assessment of recovery is very complex. Ask many people with LC and they can tell u how many times they thought they recovered (sometimes remission for months) and then bam symptoms are back. Thoughtful questions about recovery vs managing symptoms to function are necessary.
3/7
Read 7 tweets
Jan 20
I wrote this in August 2020 in @TheLancet:

“So far in the COVID-19 pandemic, surveillance systems are not monitoring ill health and long-term implications of COVID-19, only deaths are reported.”
“A universal surveillance case definition of recovery from COVID-19 is still absent. Many people have prolonged symptoms, ill health, and reduced functionality for months, even if they were not hospitalised for SARS-CoV-2 infection.”
“We must move long-haul COVID from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests.”
Read 8 tweets
Jan 14
Don’t dismiss #LongCovid❗️
If your friend, relative, colleague, patient or child say they’re not recovered after covid believe them & help them navigate their problems. Hope doesn’t only come from medical treatments. It comes from the love, support & understanding those around u.
Whatever you do, don’t trivialise their ordeal. Saying things like ‘be positive’ or ‘just get a bit of sunshine’ or ‘others have it so much worse’ etc can cause more isolation, stigmatisation & feeling of guilt. If they say it’s hard, IT IS hard and they’re trusting u with it.
Don’t start analysing if their fatigue or another symptom is ‘normal’ or not. As a general rule, people do know what’s normal for them. They know their body before and after covid. It’s harder for young children and that’s tough, but also believe parents who know their kids well.
Read 5 tweets
Jan 13
Oh my God, this is devastating. I personally knew Fiona. I met her when we presented at the same ⁦@acmedsci⁩ event in January 2020. She was such a nice, warm, funny and friendly person, full of life. I just can’t believe it. Covid is so evil. RIP. edinburghlive.co.uk/news/edinburgh…
Her talk from that event:

Fiona made the world a better place through her work. I’m crying. Still can’t believe it. Some people feel so alive you just can’t believe them passing away. My heartfelt condolences to her family and friends. If I’m affected that much can’t even begin to imagine their suffering.
Read 4 tweets
Jan 13
Questions about the new guidance on self isolation after covid:
1/
"People self-isolating with COVID-19 will have the option to reduce their isolation period after five full days if they test negative on both day 5 and day 6 and do not have a temperature, from Monday 17 January"
2/
Does "have the option" mean that if people want to be on the safe side and isolate longer they can (and be excused by their employers) even if negative LFTs on days 5 and 6? In other words, are they *obliged* to end self-isolation on day 6 if they test negative on days 5 & 6?
3/
"and do not have a temperature"

Does this mean they can end isolation after five days if they're still symptomatic e.g. coughing and sneezing on day 6?
Read 4 tweets
Jan 11
“endemic”
“only those with underlying conditions”
Read 11 tweets

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