Beyond beliefs: risk assessment technologies shaping patients' experiences of heart disease prevention

Social science research on lifestyle-related diseases typically focuses on patients' understandings and beliefs and takes the clinical risk for granted. We interviewed 30 healthy UK patients at high risk of heart disease, recruited from a family history trial at 2 weeks and 6 months after a discussion with a clinician about their risk, lifestyle and medications. The participants took four different paths: (i) pharmaceutical (most common, risk reduction with cholesterol lowering statins), (ii) mixed (statins and behaviour change), (iii) behavioural (behaviour change, focus on wellbeing) and (iv) 'lost' (no prevention, difficult social/personal circumstances). Drawing on Berg we argue that coronary heart disease (CHD) risk assessment technologies are formal tools that generate, rather than represent, high risk in a way that patients often experience lifestyle change as futile, because it rarely reduces their cholesterol to targets defined by the tools. We suggest social scientists studying incipient or 'proto-diseases', such as CHD risk, should not only focus on understandings but also investigate the technologies (and the associated guidelines, policies, clinical practice and pharmaceutical industry operations) that generate incipient diseases and patients' experiences of them. However, technologies do not determine experience and we also discuss elements that direct patients down other than the pharmaceutical path.