Six ‘biases’ against patients and carers in evidence-based medicine

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..... 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) [5], [6]. Notwithstanding this, patients may seek out medical information and self-monitor biometric variables, with or without the knowledge or support of their clinician [7]...... The options tabled by the clinician for a ‘shared decision’ may or may not resonate with what has occurred in the patient’s world up to this point. Furthermore, following a (more or less) shared decision, the patient goes away and re-enters what has been termed the ‘lifeworld’ [12] – a world where people rather than biomedical variables have salience and where it is particularities, not mean values or generalizable truths, that matter [13]. In this world, different factors will be at stake; the illness as lived will differ from the disease or risk state in the evidence-based guideline, and may well be at odds with the outcomes (whether ‘patient reported’ or not) measured in the research trial [14]. With the help of particular carers, family, friends, and peers (whether defined as ‘carers’ or not), the patient tries to align the evidence-based model of disease with the actual experience of illness or (assigned) risk.....