Weiner, K.  (2009) ‘Lay Involvement and Legitimacy: The Construction of Expertise and Participation within HEART UK’, in Journal of Contemporary Ethnography, 38 (2): 254-273.

[A rather shallow study of what happens when laypeople meet professionals in an apparently representative committee.  The professionals dominate.  In fact, there is some much better and much older work on this theme in the discussions of the first attempts to involve parents as governors in English schools (see Beattie 1985 for example).  The professionals dominated then, and the analysis used Lukes’s three dimensional model of power, much used elsewhere.  This analysis, which seems to be based on a doctorate, uses a mixture of participant observation and some document analysis, with a few semi structured interviews.  The author is able to spot inductively that something fishy is going on, but lacking any theory of how power is exercised, she doesn’t get very far].

HEART UK was founded by merging a patient focused charity and a professional medical body.  This sort of merger has been much discussed in health policy in the UK, and in some cases, it seems to have led to or serious challenge to over medicalised conceptions of illness: an AIDS organisation is cited as the best example here, where lay involvement seem to have led to the construction of new scientific knowledge and practices.  Not so in this case, though.  This case shows that other possibilities are also possible, especially in granting legitimacy to professional organizations [and following other tactical agenda such as meeting the UK Government’s recommendations for lay involvement, which probably has resource implications].

The nearest we get to the systematic account of the possibilities, is a discussion of three possible models.  The ‘auxiliary association’ involves laymen simply delegating authority to medics.  The ‘emancipatory model’ involves a challenge to professional constructions.  The  ‘partnership model’ seems to offer a kind of division of labour between researchers and patients considered to be partners in providing a different kind of user information (257).  The more optimistic sociologists have seen such combinations of laymen and professionals as new social movements, with a fundamental shift of power away from the professionals.

The participant observation and interview based studies shows that the organisation went through an evolution towards professional absorption and legitimacy.  Participation seems to have involved attending a public meeting the as an observer, and some had talks with the administrative staff.  Various official records and documents were analysed, and ‘an element of image management’ noted (259) tend semi structured interviews were carried out, five with patients members and five with professional members [and you get a Ph.D. for that?].  The patient organisation began with raising the profile for people suffering from excessive cholesterol and arguing that cholesterol was an important issue in heart disease.  At this stage, it was a purely voluntary organisation.  However, professional medics and professional administrators joined.  At the same time, a local support groups seem to have died away.  Medical researchers were involved in the early profile raising stage, but became dominant in later stages.

Professionalisation occurred for the usual reasons – having to deal with government and other organisations.  There was some initial expectation that the two components could balance each other in terms of benefiting from combined expertise.  These instrumental reasons were apparent from the beginning, including the influence of currents policies to involve patient members.  [There is a reference here to Meyer and Rowan as well, which is interesting—they are the inventors of the concept of ‘the logic of confidence’, a system of mutual assurances which helps everyone maintain confidence in the organisation.  This system virtually dominates a number of large organisations, including HE, where it is known as ‘quality assurance’].

As professionalisation developed, lay people were involved only at annual general meetings.  Lay members were outnumbered by professional members on the organizing committees.  This article goes on to round out this formal analysis by looking in more detail at actual roles.  At one level, patient experiences were seen as important sources of knowledge about practice.  Sometimes, lay members were able to provide additional professional skills—business and finance, law or management.  However, ordinary members were not well involved, and their ‘degree of influence is not clear’ (265).  At the meetings themselves, it was acknowledged that patient involvement needed to be increased.  Generally, professionals were left to get on with the scientific and technical matters, following the ‘auxiliary association’ model.  Notes taken of a meeting indicate two sorts of questions and discourses—technical and practical, with a  ‘disjunction’ between them (266).  Problems of grassroots involvement are increased by the nature of the condition, which is ‘not associated with strong disease identities’ (267), hence there is no ready made constituency of the usual kind.  However, there is still a need to raise awareness, and this is not being effectively discharged.

Consequences like this need to be understood as an unintended outcome of current policy.  Particular mergers might simply be expedient or pragmatic rather than interested in developing genuine new relations between lay and professional members.  The potential challenge to professional knowledge has been overestimated.  The extent of strategic collaborations needs to be researched.  Work from the USA suggests that similar organisations have not produced ‘open, transparent science’ (269).  There is a hint that credentials might play an important role in this imbalance (!) (270 ).

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