Participation of civil society in European Union (EU) decision-making and agenda-setting: role of patient organisations on EU health policy

• Autor(a) principal: Cardoso, Ana Lucia Vitorino
• Data de Publicação: 2017
• Tipo de documento: Dissertação
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://hdl.handle.net/10451/27611
• topic: European Union; health policy; civil society organisations; patient organisations; patient advocacy

Civil society organisations (CSOs) play a prominent role in influencing national, regional and international policies. They are a key player in democratic societies, have shown to complement (and even replace) governments when it comes to health delivery and provision of services, and have gradually become global players as a result of globalisation. The focus of this study is the policy work of European CSOs representing (directly or indirectly) patients, and which normally act on behalf of national CSOs. The study aims to assess how successful civil society is in representing patients at the EU level and whether this representation has led to policy change. The dissertation explores factors that may influence the success of CSOs when advocating for EU health policies. A two-fold method has been adopted. The first element includes a review of scientific (28 articles were fully read and others consulted). The second element includes 14 semi-structured interviews conducted with high level stakeholders, 12 with representatives from CSOs working at the European policy level and two with officials working for institutions that develop and implement policies (i.e. policy-makers). Findings suggest that it is difficult to measure the influence of CSOs in EU health due to the abstract nature of policy work and the policy process, which is not linear. Moreover, the number of interactions and collaborations that exist are complex in nature hence difficult to map and analyse. Although there are challenges that both CSOs and policy-makers face in relation to patient participation in the development and implementation of policy, a number of success stories were provided showing that CSOs play an instrumental role in EU and national health policy. Although the complexity of EU advocacy makes generalisations difficult, patterns were found in interviews such as the way partnerships and coalitions are built, the way challenges are addressed and the way CSOs adapt to policy change. Future research is needed to explore in-depth formal and informal relationships and confounding factors to provide a clearer link between CSO advocacy work and policy outcomes.