João Arriscado Nunes

Introduction: Democracy, Participation and Grassroots Movements in Contemporary Portugal

The last three decades have witnessed a succession of processes of political and social transition in various regions of the world which brought with them a spread of the institutions of liberal, representative democracy beyond the European-North American setting where they originated. From southern European countries like Portugal, Spain and Greece in the mid-1970s to several Latin American, Asian and African countries, Eastern Europe and the former Soviet Union and South Africa in the 1980s, democratization followed different paths associated with a diversity of historical experiences and dynamics of political and social conflict. At the turn of the twenty-first century, in what some have seen as the culmination of these ‘waves of democratization’, the Washington consensus version of a new, post-Cold War world championed a convergence towards a common, minimal model of representative democracy and a global capitalist economy as the condition for peace and prosperity at the global scale. International organizations like the World Bank included the establishment of democratic institutions and free elections among the set of conditions required for loans and development projects. Over the last few years, however, the promises that the virtuous combination of parliamentary democracy and global capitalism would bring in its wake more development, more equality and less injustice were added to the already long list of the unfulfilled promises of modernity. It will hardly come as a surprise, then, that as different forms of resistance and opposition to the dynamics of neoliberalism emerged, the debates on the theory and practice of democracy and on its links to social, environmental, cognitive and cultural justice gained in visibility and intensity.

From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal

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.

Oncology research in late twentieth century and turn of the century Portugal: a scientometric approach to its institutional and semantic dimensions

This paper analyses the developmental dynamics of oncology research in Portugal during the second half of the twentieth century and early twenty first century. Grounding its conclusions in a scientometric analysis of a database of publications covering the period 1976–2015, the paper shows how the expansion of oncology research from the end of the 1990s through the 2000s is closely related to science and technology policy decisions in the country. The main actors of the institutional evolution of the field are public organizations, both hospital and academia/research-based, frequently working together. Portuguese oncology research focused especially on organ-based cancers, underlining the strong link between the laboratory and the clinic. Accordingly, translational research is a major trend in oncology research, as evidenced by the analysis of publications in major journals and inter-citation maps. Networks of institutional co-authorships show the importance of regional and international collaborations. The collaboration patterns over time reveal the importance of national and European collaborations during the initial years covered by our publication database, in line with the major impact of Portugal’s integration into the European Union, and a growing importance of regional collaborations, as well as with North and South American institutions in more recent years. Portugal provides a case study of how twentieth century policies at the national and European levels have impacted on the evolution of oncology research in countries from southern Europe.

Populações serranas excluídas, cidades insustentáveis: o enigma da participação pública

By highlighting the extreme event of 11-12 January 2011 in the mountain cities of the state of Rio de Janeiro, Brazil, an attempt is made to exemplify the triad paradigmatically: contemporary problems / government inability to adapt / low public participation, and highlight the issue with some reflections on the gap between discourse on social participation and its inexistence. The goal is to elicit reflection that generates a polemic regarding the technical nature of the scientific reports produced and thus be able to integrate the overriding question into the set of reflections: How can one plan more resilient locations that are simultaneously socially equitable, have economic vitality, are environmentally compatible and less vulnerable to disasters? The reflections are the result of the analysis of technical and scientific documents.

Portugal e Brasil no cenário da saúde mental

This article aims to discuss the intervention models in the field of mental health in Portugal, establishing distinctions based on Brazil mental health references. It is underlined that while mental health in Brazil was marked by the Psychiatric Reform, guided by italian model, in Portugal mental health is following the reference of Sector Psychiatry. There were four semi-structured interviews with professionals and Portuguese patiente relatives. The text concludes with the statement that in Portugal the Sector Psychiatric has not yet reached its full proposition of community care.

Narrativas sobre a experiência da doença: desafios conceptuais e metodológicos

This article provides an overview of the process that led to the adoption of a methodological strategy that privileges personal narratives on illness, within the framework of an ongoing research project. To this project, which focuses on three types of pathologies (cancer, respiratory diseases and child obesity), qualitative methodologies were considered as the most suitable, on the one hand, because of the richness of the information they elicit, on the other, by their adequateness concerning conjectured goals and work hypotheses. Hence, the use of MINI (McGill Illness Narrative Interview) (Groleau et al., 2006) was privileged, considering its appropriateness to the field.A preliminary approach to the methodological and conceptual choices is presented, as well as an account of the importance of personal illness narratives in the objectives of the project.

A emergência do sujeito participativo: interseções entre ciência, política e ontologia

Nas ultimas decadas, os dispositivos de participacao publica tem registado um crescimento exponencial. Estes procedimentos podem assumir uma diversidade de configuracoes, gerando um numero de questoes teoricas e praticas. A partir da analise de dois estudos de caso – grupos de discussao sobre nanotecnologias em Coimbra, Portugal, e Conselhos de Saude em Belo Horizonte, Brasil – este artigo oferece uma reflexao sobre as questoes politicas e metodologicas relacionadas com a concecao e implementacao de procedimentos participativos. A analise explora a emergencia do cidadao participativo, associado a capacidades e formas de conhecimento que permitem a intervencao em espacos deliberativos. Argumenta-se que os dispositivos participativos e os processos de subjetivacao estao interligados, dialogando-se com as reflexoes de Foucault sobre subjetividade e com abordagens pos-humanistas no âmbito dos Estudos Sociais de Ciencia e Tecnologia. Os dois estudos de caso ilustram como os procedimentos participativos geram novas capacidades epistemicas, retoricas e normativas associadas a habilitacao e subjetivacao dos participantes. Dessa forma, o artigo explora os aspetos politicos das praticas, metodologias e processos que suportam o envolvimento de cidadaos em ciencia, tecnologia e saude, contribuindo para a desnaturalizacao do sujeito participativo e para o reconhecimento da dimensao performativa das ciencias sociais.

TERRITÓRIO E SISTEMAS VITAIS NA SAÚDE

Este artigo tem como objetivo colocar em analise o conceito de territorio na saude. A proposta de reflexao focaliza as circunstancialidades e os efeitos que se constituem quando o conceito de territorio torna-se um vetor de producao de praticas em saude. O territorio torna-se, na Politica de Saude, um conceito operacional das praticas, de modo a constituir-se como um vetor de organizacao e conexao de distintos elementos que emergem e se estabelecem no campo da saude. O territorio se estabilizara para alem de uma demarcacao fronteirica da Nacao e assumira uma conformacao de agenciamento maquinico de corpos, espacos, relacoes, subjetividades, vida. A discussao sobre o territorio e feita a partir de alguns elementos das Politicas de Saude e da nocao de seguranca de Sistemas Vitais.

The Role of Distributed Health Literacy in Asthma Integrated Care: A Public Medical Context from Portugal

Background: Improvements in asthma integrated care might be achieved through in-depth knowledge about how health literacy is dispersed through a group. This study intends to map out health literacy mediators (those who makes his/her literacy skills available to others for them to accomplish specific literacy purposes) and how they enable self-management skills in patients with asthma. Methods: Twenty interviews were conducted in a Primary Care Center of Porto using the McGill Illness Narrative Interview. Data were thematically analyzed as case-based and process-tracing-oriented. Results: Interviewees with a dense network of mediators revealed a low impact of asthma on their lives, dependence on primary care physician for instrumental support and dependence on family members to provide emotional/pragmatic support. Interviewees who relied on a restricted network of mediators (belonging to formal sources of health services and providing informational support) described episodes of crisis as disruptive and demonstrated a reactive approach to self-management skills. Conclusions: The roles performed by core health mediators (health professionals, family/friends, media) in support of asthma management varied according to patients’ narratives of minimization/disruption, connected to dense/restricted social networks. To clarify the boundaries of responsibility-shifting and to enrich support provided by formal sources of health services and peer education groups is needed.

Education for Sustainability in the Context of Community Forestry

Community forestry in Portugal is emerging as a promising form of multifunctional forestry that combines scientific and technical knowledge with the participation of the local residents in decision-making. These forests are governed by collective property arrangements (baldios) based on millenarian traditional usufruct rights of a local community of commoners (compartes). Participation is open to all the new residents regardless of their gender, activity or status. However, during the 20th century the connection between the commoners and the commons was severely disrupted by the Forest Services by compulsory afforesting the lands with tree species unknown to the local populations and provoking the decline of collective agro-pastoral practices, which was most severe close to urban areas. We describe our experience with a community of compartes that recently gained back control of its common lands and initiated a project to revitalize a degraded forest in the mountains after four decades of co-management with the State. We also detail the specificities and challenges that in the context of community forestry are crucial for the residents to authentically construct and take part in a commons land narrative, and the educational activities we have jointly developed to activate meaningful engagement in collective practices, intergenerational responsibility and active citizenship.