The evolution of Portuguese civil society after the postrevolution period (1974) is framed in a normalization of the concept of democracy, significantly reducing civic participation. In a period of severe austerity (2011‒14), civic and social movements emerged strongly in Portuguese society and organized protests throughout the country and abroad. Anchored to the values of the Carnation Revolution, civil society took to the streets to claim the end of austerity. In September 2012, the government withdrew one of the proposed austerity measures after a million demanded it in the largest demonstration since the time of the April Revolution. This article analyzes and discusses the representations of the protests and activists in mainstream digital media and how social movements used Facebook to engage with different publics and promote civic participation.
The history of Haiti is similar to that of other once-colonized nations, which display economic, class, gender, religious, and ethnic inequalities. As Deepa Naraya argues, when Haiti gained independence in 1804, two social groups emerged, one composed of newly freed slaves who fought for personal freedom and another of the small class of freed people who had fought for the economic and political autonomy of the nation. The result of this original cleavage is a society deeply divided and polarized between its urban and rural areas. Haitian society possesses informal connections among power circles and a rich social capital only at local levels. ; A história do Haiti é similar ao de outras nações outrora colonizadas, que exibem desigualdades económicas, de classe, género, religiosas e étnicas. Como Deepa Naraya argumenta, quando o Haiti se tornou independente em 1804, dois grupos sociais surgiram: um composto de escravos recém libertados que lutaram pela liberdade pessoal e outro de uma pequena classe de pessoas livres que tinham lutado pela autonomia política e económica da nação. O resultado desta clivagem original é uma sociedade profundamente dividida e polarizada entre as suas áreas urbanas e rurais. A sociedade haitiana possui conexões informais entre os círculos de poder e um elevado capital social mas apenas a nível ...
Dissertação de mestrado em Biotecnologia Farmacêutica, apresentada à Faculdade de Farmácia da Universidade de Coimbra ; Orphan Drug is a pharmaceutical product aimed at a rare disease. In the world, there are more than 6000 rare diseases; 80% of them are of genetic origin, and are often chronic and life-threatening debilitating conditions with extremely low prevalence for which there is no medication, diagnosis, prevention and/or satisfactory treatment. The availability of Orphan Drugs in the Market may depend on the legislation and regulations of each country individually and regulations including national Orphan Drug policies, Orphan Drug designation, Marketing Authorisation requirements. Therefore, it is very important to understand the Orphan Drug environment in order to improve research and policy development for the treatment of rare diseases. Currently, biotechnology can provide powerful tools to develop diagnostics and treatments for orphan diseases. Orphan drugs are highly innovative, especially compared to the new molecular entities that did not receive orphan designation. The number of orphan drugs approved each year appears to be increasing and orphan drugs obtained from biotechnology are gaining importance and market share, although orphan small molecules still dominate. Repatha® (evolocumab) – a human monoclonal antibody (mAb), which FDA granted the orphan drug designation for homozygous familial hypercholesterolemia in 2013, received marketing authorisation in 2015 for this orphan disease. As it exhibits an innovative mechanism of action and since its market forecast for 2020 is very significant, this new drug is presented in this thesis as a successful case study. In order to benefit from the regulatory and commercial incentives of orphan drug development, sponsors must be aware of the hurdles involved in developing drugs for rare diseases. Clinical trials involving therapies for rare diseases are challenging for various reasons, such as the very low or exceptionally reduced prevalence of these diseases, small and heterogeneous patient populations, difficulty in recruiting and high attrition rates during R&D processes. The present thesis discusses the main difficulties and challenges in developing an orphan drug, with particular focus on clinical development. In summary, the main objectives of this dissertation are: To provide a review of the regulatory framework from different Authorities around the world concerning Orphan Drug Designation; To evaluate biotechnology contribution in the development of drugs for rare diseases; To present the recently approved drug Repatha® (evolocumab) as a case study; To describe the specificities of Orphan Drug development, namely clinical development challenges and strategies. ; Um Medicamento Órfão é um produto farmacêutico que se destina a uma doença rara. No mundo existem mais de 6000 doenças raras; 80% das quais de origem genética, e que são condições debilitantes crónicas e/ou mortais. Tratam-se de doenças que apresentam uma prevalência extremamente baixa e para as quais não existe medicação, diagnóstico, prevenção e/ou tratamento satisfatório. A disponibilidade de Medicamentos Órfãos no mercado pode depender da legislação e regulamentação de cada país, incluindo a sua política nacional e o processo de designação de Medicamentos Órfãos e os requisitos de autorização de mercado. Assim, é muito importante compreender o enquadramento regulamentar dos Medicamentos Órfãos a fim de melhorar a investigação e a política de desenvolvimento destes produtos para Doenças Raras. Atualmente, a biotecnologia pode fornecer ferramentas importantes para o desenvolvimento de meios de diagnóstico e tratamentos para Doenças Raras. Medicamentos Órfãos são medicamentos altamente inovadores, especialmente quando comparados com as novas entidades moleculares que não receberam o estatuto de medicamento órfão. O número de Medicamentos Órfãos aprovados a cada ano tem vindo a aumentar e constatase que os medicamentos órfãos obtidos através da biotecnologia estão a ganhar importância e quota de mercado, apesar de os medicamentos órfãos de origem química ainda dominarem o mesmo. Repatha® (evolocumab) – um anticorpo monoclonal humano (MAB), ao qual a FDA concedeu a designação de Medicamento Órfão em 2013 para o tratamento de Hipercolesterolemia Familiar Homozigótica, obteve a autorização de comercialização em 2015 para esta doença órfã. Dado que este fármaco apresenta um mecanismo de ação inovador e, uma vez que a sua previsão para 2020 é de um mercado muito significativo, este novo fármaco é apresentado nesta tese como um caso de estudo de sucesso. A fim de beneficiar dos incentivos regulamentares e comerciais atribuídos ao desenvolvimento de medicamentos órfãos, os promotores devem estar cientes dos obstáculos envolvidos no desenvolvimento destes medicamentos. Ensaios clínicos envolvendo terapias para doenças raras são um desafio por várias razões, tais como a prevalência muito baixa, ou, excecionalmente reduzida destas doenças, populações pequenas e heterogéneas de doentes, dificuldade no recrutamento e taxas de atrito elevadas durante os processos de R&D. A presente tese apresenta e discute as principais dificuldades e desafios no desenvolvimento de um medicamento órfão, com especial enfoque no desenvolvimento clínico. Em resumo, os principais objetivos desta tese são: Realizar uma revisão do enquadramento regulamentar das diferentes autoridades a nível mundial relativamente à atribuição da designação de medicamento órfão; Avaliar a contribuição da biotecnologia no desenvolvimento de medicamentos para as doenças raras; Apresentar, como caso de estudo, o fármaco recentemente aprovado Repatha® (evolocumab); Descrever as especificidades do desenvolvimento de medicamentos órfãos, nomeadamente os desafios e estratégias durante o desenvolvimento clínico.
The Covid-19 pandemic has been a real-time laboratory for a technological future that Anderson, Rainie and Vogels (2021) describe as "tele-everything". Among other mediated practices, online shopping, virtual schooling, teleworking, telehealth, online workout, and even virtual parties were adopted in unprecedented ways to avoid physical contact during the outbreak. The pandemic has pushed people into new socially mediated practices and posed demanding challenges to those who had difficulties dealing with internet addiction or separating work time from leisure. Despite the surge of various studies about Covid-19 tracing apps, there is a lack of studies regarding students' use of mobile apps during the lockdown. Considering the ubiquitous presence of smartphones in the students' lives (Silver et al., 2019), mobile apps have been the proxy for reconfiguring the relationships between students, their families and teachers, studying routines and other social practices. This exploratory study seeks to understand the role of mobile apps in the lives of Portuguese higher education students during the period of social isolation caused by the Covid-19 pandemic. The empirical research draws on a quantitative methodology through an online questionnaire applied during the first state of emergency declared by the Portuguese Government in early 2020. A snowball process was used to gather a non-probabilistic sample (N=88), and data were analysed using descriptive statistical analysis. The results indicate that most respondents (77.2%) intensified the use of mobile apps in this period. Nevertheless, there is a considerable perception (59%) that these patterns of use of mobile apps are a waste of time ; Financial support from Portuguese national funds through FCT (Fundação para a Ciência e a Tecnologia) in the framework of the project "Mediated young adults' practices: advancing gender justice in and across mobile apps" (PTDC/COM-CSS/5947/2020)
After facing an intense negative reaction to their accumulation of social, political, and economic power and influence, several tech and social media companies rolled out "digital wellbeing" tools during the second half of 2018. This article examines the technological and discursive construction of "digital wellbeing" as enacted through operating system-based tools (Screen Time and Do Not Disturb— iOS, Digital Wellbeing—Android, My Analytics—Microsoft), and social media platforms application functions (Your Time—Facebook, Time Watched—YouTube, Your Activity—Instagram). While the companies' discourse deploys an imaginary centered around ethics and a normative experience accentuating the willfulness and empowerment of the user, the socio-material analysis of the interfaces and features shows that they envisage simple, familiar, and limited possibilities of disconnecting. Therefore, agency is limited, and the wellbeing outcomes are indeterminate, restricted to quantifying time or controlling the intentionality of connectivity.
Media literacy has been one of the main strategies for promoting the inclusion of disadvantaged groups in Europe. These policies that favour empowering uses of media and information are based on the knowledge that it is not enough to guarantee access to ICTs. Cultural and social environments can say a lot about the uses of the media and how the information is used as a capital for personal and collective development and empowerment. Social exclusion is a multidimensional process. Following the European values that place knowledge at the heart of social and economic development, international institutions have focused on policies that promote social cohesion by favouring empowering personal uses of the media. In recent years, fighting the digital divide became less about access and more about its uses. The role of media and technology in the process of social development is not underestimated. They are seen as instruments for having citizens that are more active and participative. This paper analyses recommendations and proposals that address social inequalities in the European Union through the promotion of media literacy. This analysis shows that there is a consensus regarding the acquisition of skills that can promote critical thinking and offers a deeper understanding of the various dimensions that are favoured in the European context.
Hate speech in social media has been an increasing concern, particularly during the last decade. Today, the rates of technology adoption are very high, particularly among the younger groups. Students are permanently connected through mobile technologies and the explosion of social media led to major changes in the flows of communication. Social platforms became the chosen vehicle for personal communication, for getting the news and for entertainment. At the same time, social media reflects the growing ideological polarization that is particularly visible on politics, religion, environmental and gender and sexuality issues. Hate speech is not a new phenomenon but it has specific characteristics in the online world that pose new challenges. International organizations have been promoting initiatives to support countries in tackling this issue. Social media platforms are also defining rules against diverse forms of intolerance particularly directed at vulnerable groups. Currently, there is a growing body of feminist research that has mainly focused on identifying how social media platforms can be toxic environments for women, namely by facilitating image-based sexual abuses and the sexual objectification of women and girls. Higher education students are a critical group regarding this problem. Not only they are permanently connected, but they are also frequently less prepared to deal with disinformation and discriminatory digital interactions than they think. In this qualitative study, we want to know how higher education students in Portugal deal with online hate speech, particularly gender-focused hate speech. We present results from four focus groups that were conducted with both Portuguese and Brazilian students (n = 28). Findings promote a deeper understanding of the proliferation of hate speech on social media, particularly towards female foreign students and point at the importance of promoting curricular and extra-curricular literacy programs, as well as mechanisms of monitoring on social platforms.
After facing an intense negative reaction to their accumulation of social, political, and economic power and influence, several tech and social media companies rolled out "digital well-being" tools during the second half of 2018. This article examines the technological and discursive construction of "digital well-being" as enacted through operating system-based tools (Screen Time and Do Not Disturb—iOS, Digital Wellbeing—Android, My Analytics—Microsoft) and social media platform application functions (Your Time—Facebook, Time Watched—YouTube, Your Activity—Instagram). While the companies' discourse deploys an imaginary centered around ethics and a normative experience accentuating the willfulness and empowerment of the user, the sociomaterial analysis of the interfaces and features shows that they envisage simple, familiar, and limited possibilities of disconnecting. Therefore, agency is limited, and the well-being outcomes are indeterminate, restricted to quantifying time or controlling the intentionality of connectivity.
The social isolation caused by the Covid-19 pandemic was a challenge to the ongoing digitisation of societies. The massive use of the Internet and mobile applications has (re)configured social practices, relationships, and labour routines in unprecedented ways. Facing the challenges brought by social isolation, the uses of mobile apps have also changed during this period. Therefore, it is essential to understand how they dialogue with personal, social and civic intervention contexts. Research on mobile applications has mostly taken the theory of uses and gratifications or the approach to risks and opportunities. Specifically, regarding the Covid-19 pandemic, most of the research performed during this period has focused on contact tracing apps and privacy concerns. Considering the lack of in-depth research on the individual, social and civic implications of the uses of mobile applications in Portugal during the period of social isolation, we present an exploratory study to contribute to understanding a). the role of these digital platforms in citizens' daily lives, and b). the perceptions of people regarding their use of mobile apps. The empirical research, conducted during the first state of emergency the government declared, was operationalised through a quantitative-extensive methodological strategy using an online questionnaire survey. Sampling was non-probabilistic collected through the snowball process (N = 220). Data were analysed using descriptive and inferential (bivariate) statistical analysis. The study indicates that the use of mobile apps became more frequent during social isolation. The results show how contacting family and/or friends through mobile applications and consulting the news media to learn more about the situation have become frequent activities. Regarding the perceptions of usage, results suggest that some patterns are considered a waste of time. The study results contribute to a deeper understanding of the importance of mobile apps in everyday life during social lockdowns. The results ...
The research about the concept of influence on Twitter is still underdeveloped. This work is a theoretical and empirical approach on how politicians are engaging with citizens and/or journalists, and how these social conversations are framed under specific topics and users. The idea of new influentials on political communication in the new media ecosystem, as some studies found (Dang-Xuan et al, 2013), can offer empirical pursuit of the suggested 'two-step flow model' as applied to the agenda-setting process (Weimann et al., 2007) in the case of the microblogging for campaigning online. Following the recent research about how politicians try to reach their potential audience (Vaccari and Valeriani, 2013; 2013a), this paper analyses the social conversations on Twitter driven by politicians, the main topics in these political conversations and the kind of flows of communication (direct or indirect) between politicians, journalists and citizens. This research explores the differences and similarities about influence on Twitter during European elections in two countries with similar political and economic contexts: Portugal and Spain.
"1646-5954/ERC123483/2016" ; The research about the concept of influence on Twitter is still underdeveloped. This work is a theoretical and empirical approach on how politicians are engaging with citizens and/or journalists, and how these social conversations are framed under specific topics and users. The idea of new influentials on political communication in the new media ecosystem, as some studies found (Dang-Xuan et al, 2013), can offer empirical pursuit of the suggested 'two-step flow model' as applied to the agenda-setting process (Weimann et al., 2007) in the case of the microblogging for campaigning online. Following the recent research about how politicians try to reach their potential audience (Vaccari and Valeriani, 2013; 2013a), this paper analyses the social conversations on Twitter driven by politicians, the main topics in these political conversations and the kind of flows of communication (direct or indirect) between politicians, journalists and citizens. This research explores the differences and similarities about influence on Twitter during European elections in two countries with similar political and economic contexts: Portugal and ...
In our stakeholder consultation following up on trends concerning the micro and macro politics of audience action, we explore the potential impact of audiences' micro-participation and connection to macro-actions. We address this issue taking into consideration intrinsic continuities and discontinuities between academia and the stakeholders' perspectives. ...
