Funded project: Multi-layered medical uncertainty: The interaction between medical research, the clinic and patient experience...

[Andy]

Full title: Multi-layered medical uncertainty: The interaction between medical research, the clinic and patient experience in the context of highly uncertain conditions

From the Wellcome Foundation website,

Dr Cinzia Greco
University of Manchester, United Kingdom

Project summary

How can we understand the different forms of medical uncertainty, their interplay, the debates that surround them and the linkages with socio-economic vulnerability? Using qualitative in-depth interviews with patients, clinicians and researchers, documentary analyses and hashtag ethnography, this project will explore four conditions characterised by multi-layered medical uncertainty (i.e. simultaneous uncertainty about aetiology and diagnosis alongside the scarcity of specific treatments) both in their historical developments and in everyday experiences. The four conditions that will be explored are fibromyalgia, ME/CFS, Long Covid and chemobrain. The project will explore how patients contend with the illness experience, the often difficult processes of obtaining a diagnosis and having it recognised by other medical professionals and society at large, and the scarcity of specific treatments. The project will further analyse how clinicians and researchers manage the everyday uncertainty in their work, and the debates, negotiations and conflict between them and the patients surrounding the definitions of these conditions. The result will be an understanding of medical uncertainty that is multi-dimensional, dynamic and social. Finally, this project will include a public engagement component that aims to increase awareness of these conditions and of their under-diagnosis and under-recognition, particularly among primary care professionals.

Link

 

[Jonathan Edwards]

One thing to be careful of in a study like this is the fact that doctors do not do what they say they do or even what they thin they do. Accounts of 'everyday uncertainty' are likely to be fabricated to suit the questioner.

 

[rvallee]

Feels like the problem is a lot less uncertainty, about the illness and its cause, and more about certainty about what some people think it is, despite having no plausible evidence for it. We could use a lot more comfort with uncertainty here, or certainly a lot less certainty about things that are obviously false and consist mostly of hallucinations. It's very clear that there is a lot of compensation happening, false overconfidence to make up for genuine ignorance.

Our problem is really not with those who don't know and can admit it, it's with those, and they are legion, who are convinced strongly enough about a bunch of hallucinations to make authoritative decisions that ultimately ruin tens of millions of lives.