Expert Patients and Human Agency: Long-term Conditions and Giddens' Structuration Theory

Abstract

This paper critically examines the UK government's approach to long-term sickness, the 'Expert Patient', examining its relationship to the 'Third Way' project, its social theoretical underpinnings, the motivations for wishing to introduce it and the dangers of assuming that the pilot studies that have been carried out in the US and UK for the scheme are generalisable across the population of those with long-term conditions. Instead, it considers the nature of the dependent relationship between the long-term ill and the state, and asks why governments have come to be so averse to it, and asks who should be responsible for care decisions in healthcare.

‘It's not my job. I’m the patient not the doctor’: Patient perspectives on medicines management in the treatment of schizophrenia

“…This study indicates that it can be problematic to apply an approach to care that requires patients to assume responsibility for treatment. Practitioners need to be aware that health policy in the USA and UK which promotes self-care by patients may not be generalisable across all people with long term conditions [43].…”

Provision of cancer information as a “support for navigating the knowledge landscape”: Findings from a critical interpretive literature synthesis

“…The emphasis on the dialogic nature of the (co-)navigation of cancer information, and the co-production of shared meanings that is achieved in this process, points to another essential aspect of the conceptualisation of information provision as a "support for navigating the knowledge landscape": the understanding of patients' agency in the clinical interaction as essentially relational (Greener, 2008;Sherwin, 1998) (Pollock et al, 2008;Wyke et al, 2011). This process of interpretation may not always lead to an "expert" or even "correct" understanding of illness, or guarantee the adoption of adaptive coping strategies.…”

“…They can also acquire useful insights, as well as misconceptions, about the disease and its treatments.' (McCaughan & McKenna, 2007) In receiving and using information patients are selective and creative, acquiring misconceptions as well as "authorised" information, adopting adaptive and maladaptive strategies (Åsbring & Närvänen, 2004;McCaughan & McKenna, 2007;Pollock et al, 2008;Tritter, 2009 (Pollock et al, 2008) While recognising the individuality of patients' experiences, needs and preferences, this concept avoids picturing cancer patients as atomistic, rational and self-actualising actors, or "knowledgeable agents who can account for their actions and know a great deal about the world in which they act" (Greener, 2008). Instead, it draws attention to the importance of relationships in shaping patients' attitudes to illness and healthcare, and their resulting actions (Sherwin, 1998;Weiss & Lorenzi, 2005).…”

“…(Greener, 2008) In this vision, patients who prefer minimal information or do not choose to participate in medical decision-making may be interpreted as having made an "autonomous choice of dependency" (Butow et al, 1997) rather than signalling a system's failure to enable them to be free and "engaged". This understanding of agency and autonomy as relational, contextualised and situated (Sherwin, 1998) (Pollock et al, 2008) …”

Valued identities and deficit identities: Wellness Recovery Action Planning and self-management in mental health

“…There is currently a shift towards self‐management and ‘expert patient’ programmes occurring across the health sector in western countries (Davidson 2005; Greener 2008; Kennedy and Rogers 2009). There has been little thought given to the consequences of this shift for identities of health consumers.…”