Public participation in health policies and organisations
This time, Hinnovic turns its attention to a “social” technology that is increasingly being used to address medical innovations and, more generally, issues surrounding scientific and technological developments: public participation.
Perhaps the first question that comes to mind when thinking about public participation is: who exactly should participate? There are many answers to this question. Some advocate recruiting “ordinary” people who have no direct stake in the concerned field and who can therefore, it is argued, provide an outside perspective and represent the “public interest.” Others favour participants who have direct experience with the problem or issue – people with concrete knowledge, such as patients or users of the technology. Still others argue for the participation of, for example, representatives of community organizations or patient associations.
The reasons underlying efforts to mobilize the public are no less varied: to understand the point of view of citizens, to make political decision-making processes more transparent or more legitimate, to inform the population, to make society more democratic,… to manipulate public opinion? The goals of consultation processes are not always well defined; yet clear objectives are crucial to identifying the “proper” participants, the questions to ask and the consultation process to adopt. It is rarely citizens who initiate discussions on issues around techno-scientific developments because the public is generally not knowledgeable about this sphere. Rather, it is policy makers and researchers who lead mobilization efforts. Moreover, increasingly, some are stressing the need to support participants so they are able to fully grasp the issues being debated. The degree of “training” required varies depending on the objectives. Such diversity is also evident in the methods used to obtain the public’s participation; creativity abounds, with a range of approaches from more to less formalized and no fixed hierarchy of methods. The situation is in constant flux, not only for researchers, but also for governmental and non-governmental organizations. So not just “who” but also “why” and “how” continue to be key questions.
But what if citizens talk to experts and policy makers but are not heard? Or do not receive any response to their input? Clearly, two other dimensions need to be considered. The first is the development of the capacity of experts and policy makers to hear and discuss with the public. The second is the asymmetry in position between the public and experts / policy makers, and how this plays upon the public’s ability to influence the process. Thus, public participation also raises the issue of power relations.
Finally, on what subjects is the public’s input needed? Should the scope of their intervention be circumscribed to a particular area? The examination of the risks associated with an innovation is often seen to be the special domain of the public. But why confine the public to the discussion of risks? Is it only because a technology presents no risks that it becomes desirable? Is safety the only value that needs to be debated? Risks, values, potential uses and users, directions in the development of applications; why limit a priori the subjects on which the public’s views are solicited? Increasingly researchers are asking that the public be brought into the process to reflect and voice their opinions – both downstream and upstream in the process of techno-scientific development and policy making. Public input is now being sought on directions, not just consequences. And once the possibilities for discussion have been expanded, how will the subjects for discussion be selected? And who will select them?
Hinnovic invites you to hear what our collaborators have to say on these issues. Julia Abelson discusses public participation in policy making with our journalist. Through texts and interviews, a number of collaborators – Olivier Demers-Payette, Devidas Menon, Ghislaine de Langavant, Antoine Boivin, Janet Wale, Michel Venne and Yanick Farmer – share their experiences and thoughts on public participation in a variety of health science and technology fields. Finally, Marian Barnes raises questions about the place given to emotions in the contributions of the public at consultations.
|Author :||Geneviève Daudelin, Ph.D.|
Abelson J, Forest PG, Eyles J, Smith P, Martin E, Gauvin FP. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Social Science and Medicine 2003; 57(2):239-251.
Lehoux P, Daudelin G, Demers-Payette O, Boivin A. Forstering deliberations about health innovations : What do we want to know from publics? Social Science and Medicine 2009; 68(11):2002-2009.
Martin GP. Representativeness, legitimacy and power in public involvement in health-service management. Social Science and Medicine 2008; 67, 1757-1765.
Wynne B. Risk as globalizing ‘democratic’ discourse? Framing subjects and citizens. Leach M, Scoones I, Wynne B, eds, Science and citizens. Globalization and the challenge of engagement, London, New York: Zed Books, 2005, 66-82.
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