Martin Graham P
Institute for Science and Society, University of Nottingham, Nottingham, UK.
Soc Sci Med. 2008 Dec;67(11):1757-65. doi: 10.1016/j.socscimed.2008.09.024. Epub 2008 Oct 14.
Public participation in health-service management is an increasingly prominent policy internationally. Frequently, though, academic studies have found it marginalized by health professionals who, keen to retain control over decision-making, undermine the legitimacy of involved members of the public, in particular by questioning their representativeness. This paper examines this negotiation of representative legitimacy between staff and involved users by drawing on a qualitative study of service-user involvement in pilot cancer-genetics services recently introduced in England, using interviews, participant observation and documentary analysis. In contrast to the findings of much of the literature, health professionals identified some degree of representative legitimacy in the contributions made by users. However, the ways in which staff and users constructed representativeness diverged significantly. Where staff valued the identities of users as biomedical and lay subjects, users themselves described the legitimacy of their contribution in more expansive terms of knowledge and citizenship. My analysis seeks to show how disputes over representativeness relate not just to a struggle for power according to contrasting group interests, but also to a substantive divergence in understanding of the nature of representativeness in the context of state-orchestrated efforts to increase public participation. This divergence might suggest problems with the enactment of such aspirations in practice; alternatively, however, contestation of representative legitimacy might be understood as reflecting ambiguities in policy-level objectives for participation, which secure implementation by accommodating the divergent constructions of those charged with putting initiatives into practice.
公众参与医疗服务管理在国际上是一项日益突出的政策。然而，学术研究经常发现，公众参与被医疗专业人员边缘化，这些专业人员热衷于保留对决策的控制权，破坏公众参与成员的合法性，尤其是通过质疑他们的代表性。本文通过对英国最近引入的癌症基因检测服务试点中服务使用者参与情况的定性研究，利用访谈、参与观察和文献分析，审视了工作人员与参与的使用者之间关于代表性合法性的这种协商。与许多文献的研究结果不同，医疗专业人员认可使用者所做贡献具有一定程度的代表性合法性。然而，工作人员和使用者构建代表性的方式存在显著差异。工作人员看重使用者作为生物医学主体和普通民众的身份，而使用者自身则从更广泛的知识和公民身份角度描述其贡献的合法性。我的分析旨在表明，关于代表性的争议不仅与基于不同群体利益的权力斗争有关，还与在国家主导的增加公众参与的努力背景下，对代表性本质理解上的实质性分歧有关。这种分歧可能意味着在实践中实现此类愿望存在问题；然而，另一方面，对代表性合法性的争议也可被理解为反映了参与政策层面目标的模糊性，这些目标通过容纳负责将倡议付诸实践的各方的不同构建来确保实施。
