Interesting article about potential pitfalls of patient engagement in research

[A Former User]

Hi all,

Came across this and thought it was worth sharing.

Talks about bias against patients and caregivers in evidence-based medicine.

https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0437-x

The following quotes jumped out at me:

"we are concerned that a narrow, doctor-defined ‘patient's agenda' - epidemiologically-based and focused on a set of choices to be made during the medical encounter - is being imposed, with the best of intentions, on people who live with illness."

"The patient ...begins from a different place. Even when patients are ‘informed', ‘empowered', and ‘health-literate' (and especially when they are not), they rarely inhabit a world of controlled experiments, abstracted variables, objective measurement of pre-defined outcomes, average results, or generalizable truths. Rather, they live in the messy, idiosyncratic, and unpredictable world of a particular person in a particular family context (or, for some, in a context of social isolation and/or abandonment by family)"

[A Former User]

Well worth reading. I tweeted the link if that's OK