Who rules rare disease associations? A framework to understand their action

Abstract

The inner structure of so-called 'patients' organisations' has been accorded relatively little attention with respect to their increasing role in the medical world. This comparative study in France of eight such organisations, matching six rare disorders, explores the issue of power and decision making through the description of the entities that make up the organisation (and especially which stakeholders are represented), their mutual relationships, the temporal scope of collective action, and the concrete achievements of the organisation. Two main types of organisation are distinguished: 'pluralistic' organisations (that bring together a broad array of different stakeholders who are willing to work together) and 'monistic' organisations (where a single category of stakeholders firmly takes the lead). Their operations are very different and result from the association's composition. A key finding is that both the usual opposition between lay and expert and the reference to the diseases' characteristics prove to be irrelevant to understanding these organisations. Rather, the composition of the leading group is crucial.

The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK

“…While patients, users and consumers have challenged health professionals, managers and policy makers in important ways, they remain in a relatively weak position within health policy and clinical communities (Hogg, 1999(Hogg, , 2009Salter, 2003). Moreover, there is a high degree of fragmentation and division within this emerging movement which may have impeded its progress (Huyard, 2009;Williamson, 2008 e though note Crossley's (2006) argument that health social movements should be understood as a field of contention and not as a unified entity).…”

“…Professionals are often instrumental in establishing HCPOs and are active within them (Baggott et al, 2005;Huyard, 2009). Professionals offer medical expertise, provide advice on the latest interventions, help commission and carry out research, and are often involved in HCPOs' internal governance.…”

Redes de tratamento e as associações de pacientes com doenças raras

“…Muitas associações de pacientes são geridas por indivíduos de classe média 53 e é a idealização destes sobre os caminhos a serem tomados para lidar com a doença que determina as ações do grupo 54 . Assim, é de se esperar que os dirigentes consigam arcar com o diagnóstico e com os tratamentos de apoio, através de seu seguro saúde ou por custeio próprio, necessitando do Estado em situações específicas, tal como medicações de alto custo, alicerçados no princípio da universalidade do SUS como justificativa.…”

“…Embora unidas por uma categoria -a de 'doenças raras' , as associações de pacientes têm características distintas, determinadas pelos objetivos de seus gestores, o que, sem dúvida, influencia o movimento social como um todo 54 . Diversos atores operam as transformações políticas no país, tão necessárias para o estabelecimento da equidade em saúde.…”

Practising Comparison: Logics, Relations, Collaborations

“…This is in light of three particular variables which the literature on POs points towards: their organisational features, the nature of the conditions they are concerned with, and the national contexts within which they evolve (Huyard 2009;Löfgren, de Leeuw, and Leahy 2011). Indeed, prior to our EPOKS project, we coordinated an EU-funded specific action called 'Governance, Health and Medicine: Opening Dialogue between Social Scientists and Users' (MEDUSE), which consisted of a participatory workshop on POs' engagement with knowledge (Akrich et al 2008).…”