Abstracts Category : Other

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

by Ana Lucia Cardoso

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. As Organizaes da Sociedade Civil (OSC) desempenham um papel importante na sociedade e no contributo para a sade global. A proliferao e os esforos das OSC na rea das polticas de sade europeias e globais so fenmenos recentes que se devem em grande parte dimenso global da sade e necessidade de respostas internacionais coordenadas face a questes de polticas de sade. A globalizao aproximou as pessoas, mas as populaes tornaram-se mais vulnerveis propagao de doenas. Questes e decises relacionadas com polticas de sade tornaram-se rapidamente um assunto global, de onde emergiram, em grande nmero, novos atores e instituies. Sendo este um fenmeno recente, h necessidade de aprofundar o conhecimento nesta rea. Este estudo tem como objetivo compreender se as OSC europeias que representam pacientes (direta ou indiretamente) contribuem e influenciam aAdvisors/Committee Members: Moreno, Lus Manuel Costa, Carvalho, Jennifer McGarrigle Montezuma de.