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Dear colleagues,
We are pleased to announce the publication of a series of articles, drawn on our European-funded research project EPOKS (European Patients' Organizations in Knowledge Society).
We have a special issue, published in BioSocieties, which provides empirical data and analysis on what we call "evidence-based activism". In addition to the introductory chapter, the issue comprises four articles on patients' and users' groups engagement with knowledge-related activities, and on how these activities relate to their role in the governance of health issues. Below are the summaries and the link to the website of the journal. Should you encounter problems in accessing the articles, please let us know.
We also have an article published in European Societies, which examines European patients' organizations and their role in the shaping of European healthcare policies.
We hope that these articles are of interest to you.
Best wishes,
Volololona Rabeharisoa and Madeleine Akrich
Centre de sociologie de l'innovation, UMR CNRS 7185
PSL Mines-ParisTech, Paris, France
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http://www.palgrave-journals.com/biosoc/journal/v9/n2/index.html
Evidence-based activism: Patients', users' and activists' groups in knowledge society
Vololona Rabeharisoa, Tiago Moreira and Madeleine Akrich
BioSocieties 9: 111-128; advance online publication, March 31, 2014; doi:10.1057/biosoc.2014.2
This article proposes the notion of 'evidence-based activism' to capture patients' and health activists' groups' focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal and the United Kingdom), and in four condition-areas (rare diseases, Alzheimer's disease, ADHD - Attention Deficit Hyperactivity Disorder and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and 'experiential knowledge' with a view to explore concerned people's situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and at a collective level. This article argues that in contrast to health movements which contest institutions from the outside, patients' and activists' groups which embrace 'evidence-based activism' work 'from within' to imagine new epistemic and political appraisal of their causes and conditions. 'Evidence-based activism' entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims. From a conceptual standpoint, 'evidence-based activism' sheds light on the ongoing co-production of matters of fact and matters of concern in contemporary technological democracies.
Practising childbirth activism: A politics of evidence
Madeleine Akrich, Máire Leane, Celia Roberts and Joăo Arriscado Nunes
BioSocieties 9: 129-152; advance online publication, March 31, 2014; doi:10.1057/biosoc.2014.5
The literature on childbirth organisations focuses on their critique of medical definitions of birth practices, their efforts to promote 'natural' or 'normal' birth, their espousal of choice rhetoric and their relationship to feminism. It says little, however, about the practices these organisations use to achieve their aims. Our study of the United Kingdom, Ireland, Portugal and France explores the centrality of knowledge-based activities to childbirth activism. Through these activities, we show, organisations (i) elicit the emergence of a concerned public through constituting evidence about women's experiences of childbirth and obstetric practices; (ii) produce evidence about obstetric practices from women's perspectives; (iii) articulate this vision of obstetric practices with a critical appraisal of scientific literature; and (iv) make visible international networks of actors who share similar concerns and conceptions. Drawing upon our empirical data we propose the notion of evidence-based activism in order to capture the specificity of birth organisations' modes of engagement and to describe what they bring about. Through evidence-based activism childbirth organisations get involved in policy making and become recognised as legitimate stakeholders; reframe the issues at stake; open debate with other stakeholders; and bring about changes in the health system. Knowledge-based activities also shape the missions and objectives of the organisations.
Attention deficit hyperactivity disorder in France and Ireland: Parents' groups' scientific and political framing of an unsettled condition
Claire Edwards, Etaoine Howlett, Madeleine Akrich and Vololona Rabeharisoa
BioSocieties 9: 153-172; advance online publication, March 31, 2014; doi:10.1057/biosoc.2014.3
Attention Deficit Hyperactivity Disorder (ADHD) is an unsettled condition whose history is characterised by controversy among medical professionals. Its emergence has frequently been interpreted as an example of the growing 'medicalisation' of society and the individualisation of social issues. This article examines how groups representing children with ADHD in France and Ireland engage within this contested medical domain to develop different politics of knowledge around the disorder which become visible in their 'epistemic efforts'. These efforts emerge from, and enact, groups' understandings of ADHD as a condition, and frame their development of a politics of healthcare as a basis for articulating claims to appropriate services and treatment. We show how, in Ireland, organisations remain committed to a biomedical approach to ADHD, although their practical efforts are oriented towards complementing medication with non-pharmaceutical treatments. In France, the key parents' group opposes any paradigm that focuses exclusively on one aspect of the disorder, be it social, psychological or neurological; rather, it struggles to 'open up' the scientific domain of ADHD. Our empirical material therefore enables us to demonstrate patients' organisations' politics of knowledge as situated practices which aim to reshape the different networks of expertise on ADHD that exist in each country, and to explore medicalisation as a complex set of processes which is neither a solution to parents' problems, nor an end point for their actions.
Assembling dementia care: Patient organisations and social research
Tiago Moreira, Orla O'Donovan and Etaoine Howlett
BioSocieties 9: 173-193; advance online publication, April 14, 2014; doi:10.1057/biosoc.2014.6
In this article, we take the concept of evidence-based activism as a point of departure to understand how Alzheimer's disease (AD) associations have mobilised knowledge to re-articulate their role in the public sphere. We are specifically interested in political initiatives deployed by these organisations to shape the field of dementia care research, policy and practice in the last 5 years in the United Kingdom and Ireland. In both countries, the campaigns have emphasised the importance of developing and funding services and devices that mediate between the formal and the informal sectors of dementia care in order to support people living with dementia to stay at home for longer. Drawing on our analysis of documentary and interview data, our suggestion is that the transformation of dementia care into a 'matter of concern' is underpinned by AD organisations' harnessing, fostering, sponsoring and circulating of social research conventions and methodologies such as the survey or the interview. Our main claim is that social scientific techniques and ways of reasoning have been key in the production and maintenance of boundary relations between informal and formal care in dementia. Our work can thus be seen as integrated in a renewed interest in understanding the epistemic cultures of social research and its relationship with political institutions of contemporary societies.
From 'politics of numbers' to 'politics of singularisation': Patients' activism and engagement in research on rare diseases in France and Portugal
Vololona Rabeharisoa, Michel Callon, Angela Marques Filipe, Joăo Arriscado Nunes, Florence Paterson and Frédéric Vergnaud
BioSocieties 9: 194-217; advance online publication, March 31, 2014; doi:10.1057/biosoc.2014.4
This article investigates how the engagement of patients' organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a 'politics of numbers' for stating the fact of rare diseases as a major public health problem, and promoted patients' critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a 'politics of singularisation'. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this 'politics of singularisation' not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.
http://www.tandfonline.com/eprint/GqmWsvyPPfvCh5sP85eW/.VBHoFb_raQs
In this article, we examine how European patients' organizations (EPOs) contribute to moving patient advocacy beyond national level organizing and acting. In contrast to Europeanization studies, our contention is that EPOs are not content merely to bring national claims up to the European level nor simply enrich national debates with European issues. Rather, we argue that EPOs engage in a compounded multilevel construction of patients as 'European individuals' and of their conditions as matters of concern for Europe. Based on an analysis of the projects, pronouncements, and politics of three EPOs - European Organization on Rare Diseases, Alzheimer Europe, and Attention Deficit Hyperactivity Disorder Europe - we explore how they form European communities of patients and give shape to health issues they deem important to address at European level. We show that EPOs' involvement in the ongoing construction of Europe relies on their capacities to collect, format, and circulate comparative facts, figures, and data on the functioning of domestic health systems, drawn notably on their members' experiences. This helps them to raise discussions on the need for European health-care policies which articulate a 'Europe of markets' and a 'social Europe' to the benefit of the patients. We discuss the form of politics that this EPOs' 'evidence-based activism', as we call it, entails, and conclude with a few thoughts on their influence on the making of European health-care policies.
Madeleine Akrich, directrice de recherche
Centre de sociologie de l'innovation, associé au CNRS (UMR7185), Mines-ParisTech
60 boulevard Saint Michel, 75006 Paris
tel: 33 1 40 51 92 84; fax: 33 1 43 54 56 28
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