The public shaping of medical research: patient associations, health movements and biomedicine

The role of patient associations in the shaping of medical research is a timely topic, not least because in recent years, high profile groups, led by patients and families, have successfully campaigned to put the needs of those with rare disease on the political and scientific agenda. The Public Shaping of Medical Research is therefore a welcome addition to the growing sociological literature. Each of the 13 chapters takes a different focus: emphasizing particular kinds of collective activities mobilized around different kinds of diseases, disease categories and technologies; different models and concepts; and focusing on different kinds of issues, including the successes, failures and future challenges of such work. The list of contributors is equally varied, from medical sociologists, political scientists and science and technology studies scholars, to biologists and pharmacists, and from early career researchers to senior professors (including notable sociological theorists such as Vololona Rabeharisoa, Peter Conrad and David Hess) and patient representatives. Managing this range of voices and approaches is no mean feat, and the editors have succeeded in producing a cohesive volume. The collection was initiated at an international conference on “Patient organisations, health movements and medical research” which took place in Germany in 2012, and this will no doubt have helped the editors in recognizing and bringing together the work under shared themes. The articulate opening and concluding chapters contribute to the coherency of The Public Shaping of Medical Research, guiding the reader through the many routes and contexts within which patients, families, activists and professionals shape medical research.

The book is divided into three parts. The first draws on empirical case studies. Boralt's chapter about the breast cancer movement highlights how collaboration between activists and researchers has shifted the research paradigm from a “biomedical model” to a wider “public health model.” But she highlights this was not necessarily an easy process. It was led by “well-educated and politically savvy” activists (37) who became fluent in scientific language in order to engage in collaborative research and challenging conventional knowledge. The chapters by Reimann (focusing on the German Cystic Fibrosis Association) and Nourisser et al. (on EURODIS, a European rare disease collective) both provide interesting case studies for understanding the approach of (rare) disease associations. Akrich et al. return to a more academic discussion about “evidence-based activism” to highlight the production and circulation of patient experiences for use as evidence, a chapter that reflects the authors’ deep knowledge of the complexities and tensions surrounding patient expertise, activisms and organization. The final chapter in this section, by Lysoon and Zavestoski, focuses on obesity and “alternative food movements” as a new form of health and social movement formed around contested diseases.

The second section, titled “Shifting contexts and new challenges,” addresses the social, political and technological contexts of medical research. Conrad and Tan's chapter highlight how different groups can have diverse, and sometimes competing, perspectives, approaches and goals – even when focusing on the same disease. For example, in their example of autism, some groups emphasize the need for enhanced treatment, others call for more research into the potential effects of vaccines, and further groups suggest greater emphasis on de-medicalization (emphasizing the spectrum of human behavior and the importance of changing public perceptions). Batt's chapter focuses on the breast cancer movement in Canada, echoing Conrad and Tan's emphases on the potential for tension between communities. She highlights how collaboration between patients and scientists can bring difficulties, particularly around questions of independence, which she believes can be undermined by Canadian neoliberal policies. Hess's chapter on scientific controversies in the case of complementary alternative medicine focuses on the unequal power relations that make up the field. Hess recognizes how certain types of knowledge can be prevented from circulation, particularly if it competes with any dominant paradigms, and how regulatory systems that support clinical trials effectively prevents alternative medicine from being funded and tested. Langstrup focuses on how patients and patient groups represent themselves as future users of technologies, and specifically in this case, as beneficiaries of stem cell research. Lemke's chapter ends the section by drawing on Rabinow's theories of biosociality to explore the role of biology in shaping individual and collective identities and asking whether patient organizations can be understood as biosocial communities.

The third and final section of The Public Shaping of Medical Research focuses on the legitimacy of patient involvement in biomedical research. Buchi's chapter explores the fluid relationships between science, society and civil participation. It examines how such relationships can be understood through models of knowledge deficit, dialogue and participation. The following chapter, by Wehling and Viehover, explores political and epistemic legitimacy. This helps us to recognize the challenge for collective patient groups when the experiences, needs and visions of the patients they represent are so diverse. The section concludes with an analysis by Schicktanz. This centers on issues around epistemic justice, where, as with the previous chapter, Schicktanz calls for more transparency within diverse processes of engagement and greater recognition that participation can also lead to marginalization.

The Public Shaping of Medical Research is an interesting and thought-provoking book. Throughout, it is clear that patients and patient stories play a key role in shaping the biomedical landscape. What many of the chapters have successfully achieved is to represent the struggles of patient collectives in advancing medical knowledge and supporting the needs of their populations. These journeys involve success and failure, and choices about how to collaborate, with whom and with what agenda(s). As an edited collection, the volume is able to represent – to some extent – the breadth and depth of current research and sociological thinking. The editors, however, have also taken risks. They acknowledge that the book has limitations; for example, focusing primarily on wealthy countries in Europe and North America and necessarily being selective in which case studies are represented. The inclusion of chapters written by non-academic authors is also a gamble. However, in a book which focuses on the benefits, pitfalls and challenges of collaboration, this is an appropriate and worthwhile endeavor. With its successful inclusion of a variety of voices, approaches, topics and methods, The Public Shaping of Medical Research will find an equally wide-ranging – and appreciative – audience.

ORCID

Rebecca Dimond http://orcid.org/0000-0003-1974-7289