By Caron‐Flinterman Francisca , 2005. ISBN 978 90 9019996 2 , 192 pp. Free copies can be requested from the author directly at: francisca.caron.flinterman@falw.vu.nl
This book sits at the intersection between science and technology studies and the emerging field of public participation in health decision‐making. The focus, as the title suggests, is on the involvement of patients in decision‐making about biomedical research. The starting point is the simple observation that patients are playing an increasing role in decision‐making in a wide range of areas related to health – including health services research, health technology assessment, clinical care and priority setting for health resource allocation – but they appear to have surprisingly little input into biomedical research. The book sets out to explain why this is so and to explore the strategies that might be adopted to enhance patient involvement. The latter part of the book develops, implements and evaluates a process for integrating patients into decision‐making about biomedical research.
A New Voice in Science clearly began life as a PhD thesis. This is both a strength and a weakness. The early chapters on the book provide concise reviews of literature across the range of disciplines that are relevant to the topic: there is a description of the nature of biomedical decision‐making networks; arguments for and against patient participation in decision‐making (more of the former than the latter); accounts of obstacles to patient participation and strategies to manage these; and some very clear writing on the epistemology of patient knowledge and experience. As someone who had read rather more narrowly within this field, I found the breadth of disciplines covered and the clarity of writing about each most helpful. However, there are moments when the book's origin in a PhD thesis becomes an impediment to graceful and efficient writing. There is some repetition, an excessive amount of classification, and a tendency to overstate the gaps that the book fills. Some chapters were also published initially as journal articles, and these chapters still read, to some extent, as stand‐alone pieces. Mostly, Caron‐Flinterman succeeds in crafting a book out of a thesis, and the occasional lapses into ‘PhD‐ese’ are understandable.
For me the best parts of the book are the final chapters, in which Caron‐Flinterman describes and evaluates a ‘social experiment’: integrating patient views on priorities for asthma and chronic obstructive airways disease research into a research agenda. In the first part of the experiment, patients’ priorities for research were explored using a mix of qualitative and quantitative methods. It was clear that patients were capable of participating in a research agenda setting exercise. In addition, patients’ highest priorities turned out to match those of the relevant national research funding agency, and they placed a higher priority on biomedical research than on research on health‐care, social or political issues. Somewhat surprisingly, this finding is accepted without asking too many questions about why it might have occurred. The second part of the experiment extended the consultation process to researchers and health professionals, and used this as the basis for collaboration and prioritization stages. There is a detailed evaluation of the experiment, which finds that the participation strategy outlined above provides an adequate mechanism for involving patients in research agenda setting.
A New Voice in Science is certainly worth reading on at least two counts. First, for the reader new to writing about patient participation in decision‐making, Caron‐Flinterman provides a comprehensive account of the background to and rationale for that participation. Secondly, the chapters on the social experiment provide a description of evaluation of a complex programme that any research student would benefit from reading. My only criticism is that A New Voice in Science lacks the sharply critical edge of other writing in science and technology studies, and perhaps, all things considered, this is not such a fault after all.