These trends are undoubtedly related to the operation of other, wider, forces that have led to a challenge on the expertise of professionals. Thus medicine as a profession – as with so many other forms of professional activity – has been confronted by something of a legitimation crisis during the late twentieth century. Whether or
not such a crisis was and is linked (as Habermas would have it) to the extended interests of the state in the generalized sphere of ‘welfare’, is not perhaps for us to judge. It is enough to note its presence. It has certainly led to a negative evaluation of expertise. Habermas (1987) had argued that the notion of an expert culture whether in medicine or any other sphere of activity, was essentially anti-democratic in itself, and this position is strongly echoed in the work of other social theorists (Beck 1992).

At the professional level, the response to the legitimation crisis has been to encourage participation in decision-making and a democratization of decision-making procedures. This, in itself, has led to various expressions of a desire to activate the patient in matters of illness management. I have already mentioned trends toward shared decision-making (Mazur 2002), and to these we can easily add mention of the rising influence of the Expert Patients Movement as developed, for example, by Kate Lorig.

At the level of intellectual debate, there has been a wider trend to argue for what might be called a democratization of knowledge (Turner 2001). In medical sociology, this democratizing trend has tended to express itself in two ways. The first has been an increased interest in what lay people have to offer by way of knowledge of health and illness. The second has been a tendency to argue that lay knowledge can be every bit as valuable as professional knowledge. The two trends often come together in discussions of that 1990s hybrid, the ‘lay expert’. However, before we examine the hybrid it will serve us well to note how the trends of which I speak have rippled through the sociology of health and illness.

We need to note, first of all, that direct attacks upon the privileged position of medical knowledge and practice have been rare. The attacks that have arisen have been linked, in the main, to the intellectual influence of Michel Foucault (see Chapter 8). So, for example, Armstrong (1985)– a devotee of Foucault – has consistently argued that ‘modern medicine occupies no privileged epistemological position’ (1985: 111) (see Chapter 11). That is to say, all knowledge forms are equal. What is more, and as Bury (1986) indicated, Foucault and his followers were not the only advocates for the democratic evaluation of knowledge forms. Indeed, Bury pointed toward an amorphous though influential group of scholars whom he bagged together as ‘social constructionists’ (see Chapter 11). To Bury, the latter had variously argued against the privileging of scientific (and by implication, medical) knowledge over other forms of understanding. One of his most cogent complaints against them being that they left us with ‘No way of judging one account of reality as better than another’ (1986: 165).

Confronting issues of epistemology head on has not, of course, been at the forefront of sociology of health and illness. More common has been an examination of the use and expression of knowledge in particular contexts and circumstances. In this regard, it is the study of patient ‘perspectives’, patient ‘viewpoints’, and lay health beliefs that has preoccupied medical sociologists (Calnan 1992, Emslie 2001, Parsons 1992, Pinder 1992 and Prior 2000 and Chapter 11). In many cases, these authors were originally concerned with lay beliefs rather than lay knowledge, but as the years have passed, it seems that the concept of knowledge has gained the upper hand. Thus Williams, for example, had opened his 1984 paper with the statement that he was about to demonstrate how ‘people’s beliefs about … aetiology’ need to be understood (1984: 175, my emphasis). This is in direct contrast to later papers where lay knowledge was the term that was used (see, for example Popay et al 1998). In a parallel manner, it is of interest to note how an earlier concern with lay concepts of aetiology and disease causation (Blaxter 1983) was, by 1991, turned into a focus on ‘lay epidemiology’. The paper of Davison et al (1991) was seemingly the first time that this concept had appeared in print (although Brown (1987) had been using the term ‘popular epidemiology’ for some time).

One might be tempted to argue that we are dealing with roses by any other name. However, my feeling is that the change of language indicates the emergence of an entirely new object. Epidemiology, after all, is a form of highly skilled practice and quite different from having some (untested) ideas about what may or may not cause a disease. In a similar way, the concept of belief has a far less sturdy status than the concept of knowledge. (One may believe in unicorns, but it would be difficult to claim knowledge of them.) In any event, it seems clear that as the 1990s developed a concern with belief had been transposed into a concern with knowledge (Busby et al 1997) and that lay people had metamorphosed into multi-skilled and knowledgeable individuals; epidemiologists even. It is not so surprising, then, that around the same period one sees a new hybrid emerge – namely, the lay expert. This expert has since acquired the skills relating to diagnosis (Sarangi 2001), and pharmacology (Monaghan 1999), and has appeared as an expert in the medication of minor illness (Hibbert et al 2002).

Despite all of this, the origins of the term ‘lay expert’ are not entirely clear. However, it is clear that a concept of expertness among the lay population had been circulating through medical sociology for some time (Tuckett et al 1985). It is certainly true that researchers in the sociology of science from the late 1980s onward had tended to argue that lay people often possessed expert knowledge about complex causal relationships in the physical world (Wynne 1989 and Wynne 1996). In medical sociology, the initial claims are somewhat tentative. Thus, Tuckett et al (1985: 217) used parentheses when they referred to patients as ‘experts’, and recognized that any expertise that did exist in the patient world was limited to aspects of self-care. However, such limitations were far from evident during the 1990s. For example, during that period, Arksey was advancing a series of claims. First, that ‘in health matters, patients may themselves be experts’ (1994: 464). Second, that it was possible to blur ‘the differences traditionally assumed to exist between science and non-science, and by extension the distinction between expert and lay systems of knowledge’ (Arksey 1998: 9). It is a blurring that is characteristic of those who choose to talk of patients as lay experts (Willems 1992). In a parallel manner, Epstein (1996) had spoken of hierarchies of expertise and claimed that there was now a problem in understanding the distinction between a lay person and an expert (1996: 3). Since that point, it has been a claim echoed by numerous authors (Sarangi 2001).

As to how lay people become expert, this is a matter of some difference. For some authors lay people are experts by virtue of having experiential knowledge of a condition (Busby 1997 and Monaghan 1999). In other cases, lay experts seem to be on a par with those who have scientific training (Arksey 1998, Epstein 1996 and Wynne 1996). In yet other cases, the expertise of lay people appears as an emergent property of social groups that contain scientifically trained experts – where qualified scientists serve as translators for lay concerns (Brown 1987). Whatever the case, it seems clear that those who argue for the usefulness of the concept of lay expertise have yet to specify more precisely what lay people are (and can be) expert in. They also have need to clarify how such expertise may differ from that brought to the table by, say, nurses, and other health professionals. In what follows, and by way of example, I am going to highlight some contrast between the ways in which health professionals and lay people understand some of the detail of inheriting mutations for breast cancer. The data upon which I draw was gained from a recent ESRC funded study into the use of ‘risk’ in a cancer genetics clinic. Among other things, my example should serve to illustrate how this debate relates to the role of nurses in a modern healthcare system and how that role might be defined.