Editorial

Abstract

Self healing, co-produced care and do-it-yourself healing (DIY) care are becoming increasingly pervasive aspects of how people manage their and illness. A large part is played in this by alternative forums of social engagement such as provided by open source technology where contemporary individuals negotiate and share their everyday care experiences. This intensifying negotiation of experience is conceptualised by Fuller as manifesting an 'anti-establishment science movement' which tacitly challenges the 'scientific expert' and the 'knowledgeable doctor' - the agents and experts who for decades have controlled evidence and knowledge in the domain of care and healing (Fuller, 2010).True, the evidence-base of medicine has continued to expand over the last several decades in an effort to consolidate the scientific grounding of traditional biomedicine. As Lynch notes, 'Expertise can be hard-won, and expert advice can be a valuable and reliable guide to action. As educated people, we know and live this as a fact of daily life' (Lynch, 2007, p. 17). Lynch continues by articulating an increasingly common social concern: 'Expertise becomes a problem when it, and the grounds for it, are reified and exaggerated beyond all proportion and circumstance' (Lynch, 2007, p. 17).Indeed, the emphasis on evidence can be interpreted as not simply furnishing the consumer with more equitable and certain choice options, but as also reinforcing science's claim to be the exclusive arbiter of what is authoritative knowledge. Henderson and Petersen already addressed this problem when they observed that consumerism in care is 'often presented in terms of personal empowerment and freedom of choice' (Henderson & Petersen, 2002, pp. 2-4). As Annemarie Mol has since shown in her book The logic of care (Mol, 2008), choice does not operate transparently in the context of patients' difficult decisions around treatment, uncertainty about their recovery, and changes in their understanding about treatment and healing.Consumerism in effect is contingent on the pro-active agency of the neo-liberal and wellinformed consumer, and rejects the passive, under-informed patient cared for by the welfare state. It has thus been argued that consumerism offers '[an] imagined consumer autonomy' where people are expected to consume 'the commodity of good health (goods, services, knowledge) without challenging the monopoly of the commodity producers; that is, the biomedical industries' (Veljanova, 2011, p. 120). Keying into the new consumerism and its emphasis on rational, science-based choice, evidence-based medicine seeks to ensure that clinical practice decisions are no longer contingent on clinicians' personal opinion and individual experience (Sackett & Rosenberg, 1995).Not surprisingly, evidence-based medicine's aim has since run up against a number of problems. First, much of medicine has never been and can never be fully evidence-based (Jorm, 2012). This 'limitation' does not just arise because scientific trials are simply not possible in many domains of medicine, but also because imposing trials on medical domains might necessitate subjecting patients to unethical practices. Even more troubling of course is that several trials, of those conducted in the same domain, produce conflicting results (for example, the use or not of beta-blockers following surgical procedures1).Second, as Mol's work also showed, patients are not 'ordinary' consumers. They may need assistance with making choices; they may desire to revise their choices a day or a month into treatment; they may feel the need to make nonscientific or counter-intuitive choices (as happens at the end of life, for example), or they may feel that they are not well-placed to make choices, and demand that others, and not necessarily their doctors, make choices for them. In none of these scenarios, the role of science and the spectrum of choice options are simply given, the sole source of information, or reasonable in the strict sense of 'rational'. …