the-lancet---culture-and-health.pdf

The issue of widening health disparities can remain

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The issue of widening health disparities can remain, therefore, even in the face of apparently high levels of satisfaction. As shown by some hospitals reporting high proportions of births from women born outside the UK (as high as 76·4% in Newham Trust), 182 false reliance on data can not only warp views of the eff ectiveness of care, but also directly erase the very people whose views such monitoring procedures were put in place to protect. How can carers know what they are missing if they position themselves only to listen to what they are prepared to hear? As ethnographers know better than statisticians, you cannot measure what you cannot evidence—the empty survey form that comes back to school in the backpack of the same vulnerable child it went home with cannot inform; but the study that it is a part of can mislead. Emphasis on data more than basic human interaction—at home, with neighbours, or in clinics—contributes not only to devaluation of personal meaning, but also to widening of health disparities. When once-informative personal engagements are limited or eliminated, meth- ods emerge that sometimes only favour those who make and use them. In rural USA, communities too poor to recruit the necessary social capital to be designated as physician shortage areas not only are not helped, but are also wholly erased. 183 Obvious conditions of inequality are, here, not only hidden; they emerge with a wholly wrong meaning. Information systems (eg, online appointment and treatment management programmes) establish non- negotiable terms through which a patient’s wellbeing must be negotiated. At the same time, the easy flow of information shifts responsibility for care from the caregiver to the individual, who can now be blamed for not accessing what is on offer even if he or she might be incapable of participating in such processes. To under- stand how violence is overtly expressed and covertly embedded, research should identify not only how vuln- erability is measured, but also how the voices of the vulnerable are inadvertently eliminated. People of marginal social status risk being culturally under-represented. 184 Norms can be internalised, allowing so-called enacted stigma (shaming) and enacted deviance (blaming) to be displaced or complemented by felt stigma (self-shaming and a fear of being shamed) and felt deviance (self-blaming and a fear of being blamed). Although enacted stigma and deviance can and often do control and govern people with less voice, 185 felt stigma and deviance can be forms of social control in which people police themselves. Personal responsibility to monitor one’s risk behaviours includes, by definition, some submission to one’s own behavioural conditioning, 186–189 a colonisation by care providers, managers, and insurers of the patient’s life and, by implication, a form of communication that is largely one way.
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