Lessons from Long COVID: working with patients to design better research, 2022, Nisreen A. Alwan

[Kalliope]

Moved from the general long covid thread

Nature reviews immunology Lessons from Long COVID: working with patients to design better research by Nisreen A. Alwan

quote:
Why is the research question framed in such a way that a low accuracy laboratory test is to be believed — as a default — more than patients’ testimonies about their own health? The burden of proof should not be on ill people every time that a study implies that Long COVID is imagined. Framing illnesses that we still lack sufficient knowledge about as ‘beliefs’ can be harmful. Involving patients in shaping the question is essential for the research to be relevant to them. Also, researchers and science journals should take responsibility for how the framing of studies they publish can disadvantage people’s lives, in terms of the stigma attached to their condition and the type of care and support they receive. We have seen this happen with similar conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, and it is time for the medical research community to learn from these mistakes. Particularly for chronic conditions that are still poorly understood, we risk further biasing that understanding by assuming that we — as researchers — know how to ask the right questions.

 

[Andy]

Nature reviews immunology Lessons from Long COVID: working with patients to design better research by Nisreen A. Alwan

quote:
Why is the research question framed in such a way that a low accuracy laboratory test is to be believed — as a default — more than patients’ testimonies about their own health? The burden of proof should not be on ill people every time that a study implies that Long COVID is imagined. Framing illnesses that we still lack sufficient knowledge about as ‘beliefs’ can be harmful. Involving patients in shaping the question is essential for the research to be relevant to them. Also, researchers and science journals should take responsibility for how the framing of studies they publish can disadvantage people’s lives, in terms of the stigma attached to their condition and the type of care and support they receive. We have seen this happen with similar conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, and it is time for the medical research community to learn from these mistakes. Particularly for chronic conditions that are still poorly understood, we risk further biasing that understanding by assuming that we — as researchers — know how to ask the right questions.

From the paper [my bold].

"Also, researchers and science journals should take responsibility for how the framing of studies they publish can disadvantage people’s lives, in terms of the stigma attached to their condition and the type of care and support they receive. We have seen this happen with similar conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, and it is time for the medical research community to learn from these mistakes. Particularly for chronic conditions that are still poorly understood, we risk further biasing that understanding by assuming that we — as researchers — know how to ask the right questions.

The legacy of how research was carried out in the past in relation to post-viral illnesses should not dictate the present and future. Co-producing the relevant research questions with patients can help to correct the legacy of dismissal, which has tended to assume a predominant psychosomatic explanation for things we do not yet understand. Now that research funding for Long COVID has started to increase, it presents an opportunity to think with patients outside the box in terms of both the research questions and study designs."

 

[Arnie Pye]

I took a quick look at some of the references for that Nature article and found they were worth checking out, if anyone is interested.