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2015 - Program: Health in Digital Society. Navigating Knowledge Landscapes (NKL)

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Lucia Martinelli
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Open Access resource available for research purposes. The data collected in this dataset are narratives exploring public policies, attitudes, individual behaviors, and the collective experiences of the involved communities regarding vaccination during the COVID-19 pandemic. The narratives were written by the members of the interdisciplinary research network Navigating Knowledge Landscapes (NKL; http://knowledge-landscapes.hiim.hr/). The members of the network are scholars belonging to different research disciplines and the aim of the network is to explore and discuss the individual aspects of citizens’ navigation of (new) knowledge in the digital society. An invitation to participate in this study was sent to members of the network on May 5, 2021. First responses were received on May 13, 2021, while the last response (including updated versions) was received on July 21, 2021. In total, 25 contributions were received from 27 scholars representing 17 countries (some scholars co-authored their contributions). Each of them described strategies, ethics, and public response of COVID-19 national vaccination process in their country.The scholars are coming from different academic background, but most of them are experts in Life Sciences, Sociology, Philosophy and Medicine. The participants were asked to answer the following questions in their narratives by maximum 200-300 words per question: Part 1: The national vaccination program Describe the COVID-19 vaccination in your country: what were its strengths, main weaknesses, opportunities to improve it and threats to its success? Part 2: Public discourse and ethics How would you describe public responses to your country’s vaccination program? What is your impression on the various collective attitudes towards the vaccination program in your country? Were there any ethical issues or concerns around the vaccine program in your country? Part 3: Personal experience What is your personal experience, opinion or attitude regarding COVID-19 vaccination?
Lucia Martinelli
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https://www.ilsileno.it/edizioni/ebooks/ This work adopts the concept of resilience and its attributes (safety, robustness, adaptive capacity, sustainability, governance, and anamnesis) developed in a previous work (Indirli, 2019) to analyze the COVID-19 pandemic, with specific reference to Italy during the first phase, from January to June 2020. The aim is at assess the main features of this pandemic and suggesting a suitable tool to evaluate the capability of the Italian system to manage such catastrophe. Before discussing the Italian situation, a general overview about the current COVID-19 outbreak is presented, with special focus on selected countries worldwide, which adopted different intervention strategies such as exclusion, elimination, suppression, mitigation, and no substantive strategy. With regard to Italy, an in-depth overview of the first COVID-19 phase (January - June 2020) is provided, together with detailed original lethality studies ad hoc developed. The evaluation of the resilience’s attributes is based on index values ranging from 1 to 5, using the Likert scale. A Global Resilience Index (GRI), suitable to provide a sense of direction (built or reduced resilience) is calculated, resulting for Italy 2.50, i.e. between poor (2.0) and medium (3.0), but far from very good (5.0). The pointed-out unpreparedness (a non-updated pandemic plan, almost forgotten before the COVID-19 crisis), inexperience (the absence of serious outbreaks in recent years), and inadequate timing (delayed decisions between February and March 2020) are discussed as main sources of such low resilience score. The Italian approach (as many other Western countries) shifted from denial to normalization of the risk, under-reaction, and finally to recognition and reframing. Worth stressing, healthcare system’s response, analyzed under safety and robustness, resulted weak especially at the outbreak beginning due to institutional International and National drawbacks and intrinsic vulnerability aggravated over time, despite the commendable efforts of the entire personnel. Furthermore, anamnesis and sustainability resulted dramatically low, while adaptive capacity and governance resulted a little bit better, mainly due to the lockdown phase and people’s behavior during the confinement. In conclusion, the Italian performance against COVID-19 represents an example of “un-resilience”, i.e. a situation where emergency-after-disaster replaces prevention-before-disaster, as already shown in the case of other important hazards, such earthquakes, for example. This lack of resilience is therefore a tragedy itself, considering the fact that big crises are hitting the whole world more and more frequently and hardly, intermingling political, economic, social, technological, regulatory, and environmental issues. In this context, the COVID-19 pandemic is impacting every aspect of the human and the planet existence, not only peoples’ health and wellbeing. This pandemic is also calling into question some assumptions of the democratic societies. We wish that COVID-19 pandemic would be a lesson able to push governments and citizens to be better prepared against possible emergencies of the future, many of which related to climate changes. A proactive action from public health agencies is urgent to protect populations, adopting a sustainable behavior in time of global warming and COVID-19 pandemic in all the human activities. Humanity has short time to operate effective choices and COVID-19 has been a hard test. Indeed, in our analysis comes again the fork (Indirli, 2019) between ‘engineering resilience’ (homeostatic) and ‘ecological resilience’ (autopoietic) described at the starting point of this paper: will the humanity be able to govern the next changes or shall withstand a new mass extinction, leading to a drastic collapse of the Earth biodiversity? Our analysis focused on the pandemic outbreak that is still ongoing, not yet resolved and expected to be long and complex. Therefore, it is not yet possible to provide decisive answers to this question. However, we believe we have identified a useful tool to evaluate the system's resilience to the present crisis and be prepared for possible future ones. It will be interesting to apply our methodology to the subsequent COVID-19 pandemic phases, to evaluate the effectiveness of the measures adopted, including the impact of the vaccination campaign
Lucia Martinelli
added a research item
Wearing face masks is recommended as part of personal protective equipment and as a public health measure to prevent the spread of coronavirus disease 2019 (COVID-19) pandemic. Their use, however, is deeply connected to social and cultural practices and has acquired a variety of personal and social meanings. This article aims to identify the diversity of sociocultural, ethical, and political meanings attributed to face masks, how they might impact public health policies, and how they should be considered in health communication. In May 2020, we involved 29 experts of an interdisciplinary research network on health and society to provide their testimonies on the use of face masks in 20 European and 2 Asian countries (China and South Korea). They reflected on regulations in the corresponding jurisdictions as well as the personal and social aspects of face mask wearing. We analyzed those testimonies thematically, employing the method of qualitative descriptive analysis. The analysis framed the four dimensions of the societal and personal practices of wearing (or not wearing) face masks: individual perceptions of infection risk, personal interpretations of responsibility and solidarity, cultural traditions and religious imprinting, and the need of expressing self-identity. Our study points to the importance for an in-depth understanding of the cultural and sociopolitical considerations around the personal and social meaning of mask wearing in different contexts as a necessary prerequisite for the assessment of the effectiveness of face masks as a public health measure. Improving the personal and collective understanding of citizens' behaviors and attitudes appears essential for designing more effective health communications about COVID-19 pandemic or other global crises in the future. To wear a face mask or not to wear a face mask? Nowadays, this question has been analogous to the famous line from Shakespeare's Hamlet: “To be or not to be, that is the question.” This is a bit allegorical , but certainly not far from the current circumstances where a deadly virus is spreading amongst us ... Vanja Kopilaš, Croatia.
Lucia Martinelli
added 2 research items
The data collected in this dataset are narratives exploring public policies, attitudes, individual behaviors, and the collective experiences of the affected communities regarding face mask wearing at the onset of the COVID-19 pandemic. The narratives were written by the members of the interdisciplinary research network Navigating Knowledge Landscapes (NKL; http://knowledge-landscapes.hiim.hr/). The members of the network are scholars belonging to different research disciplines and the aim of the network is to explore and discuss the individual aspects of citizens’ navigation of (new) knowledge in the digital society. An invitation to participate in this study was sent to 97 members of the network on May 11, 2020, the written responses in the form of narratives were collected until May 26, 2020. In total, 29 scholars from 22 countries responded by providing their narratives, all of them collected in this dataset. The authors belong to 9 different academic disciplines with majority of them having background in Life Sciences, Sociology, Philosophy and Medicine. The authors described in their narratives the use of face masks in their countries according to their subjective point of view, and/or how people from their social environment perceive it. The participants were asked to answer the following questions in their narratives: • Part 1: What are the rules adopted in your country about face mask wearing? What would be the overall approach for use of the face masks in your community (government instructions, availability, the citizen compliance)? • Part 2: What is your individual/personal attitude and practice in relation to face masks? If applicable, start with good practice and end with what you consider to be mistakes. • Part 3: How do you judge the behavior of people you encounter? Face masks (or no face masks) and interpersonal interactions. Again, start with positive and end with negative. • Part 4 (optional): free to say whatever you think is important to the practices of your community in relation to face masks. Although standard questions were asked, we let scholars to answer them in open-ended text. No corrections or modifications were applied to the narratives, including no proofreading or grammatical checks. The authors agreed that their narratives can be published under their full name and affiliation, and the resulting collection used for research purposes. Ethical approval for this study was obtained from The University of Edinburgh, Scotland, UK and the University of Zagreb, Faculty of Croatian Studies, Croatia.
The novelty of the COVID-19 pandemic is that it occurs in the globalized society enhanced by digital capabilities. Our aim was to analyze the psychological and emotional states of participants in different pandemic-related contexts including their digital and physical distancing behaviors. The online survey was applied during the ascending phase of the pandemic in March 2020 in two neighboring EU countries, Italy and Croatia. The study subjects involved four groups, two directly affected by epidemiological measures and two serving as controls – (1) participants from Italy who were in lockdown (Italy group), (2) participants from Croatia who were not in lockdown, but who were in direct contact with an infected person and underwent epidemiological measures (CRO-contact group), (3) participants from Croatia who were in analogous situation but not near the same infected person (CRO-no contact group) and (4) participants from Croatia who were not aware of any infected person (CRO-unrelated group). The survey consisted of validated scales of psychological and emotional states, and custom-made questionnaires on digital (online) and physical (off-line) behavior of the participants. Italy group in lockdown had higher self-perceived scores for depression, stress, post-traumatic intrusion and avoidance, as well as highest digital activity and physical distancing than the not-in-lockdown Croatian groups. The insight in extent of online activities and off-line isolation allowed introducing Digital Activity and Physical Distancing Scores. Self-perceived post-traumatic avoidance was higher in both the Italy and CRO-contact groups than the control CRO-no contact and CRO-unrelated groups, and higher avoidance correlated with higher Digital Activity and Physical Distancing Scores. Being in direct contact with the infected person the CRO-contact group had no other alterations than unexpectedly lower post-traumatic hyperarousal when compared to the Italy group. The Italy group in lockdown demonstrated higher self-perceived psychological toll together with higher digital activity and physical distancing than Croatian groups not in lockdown, even when compared to the affected CRO-contact group. The study outcomes suggest that the general emergency measures influenced citizens in lockdown more than an exposure to the virus through direct contact with an infected person.
Anna Lydia Svalastog
added 2 research items
This chapter introduces the main theme of the book and describes the broad challenges that are encountered when navigating online knowledge landscapes in the digital world. The chapter emphasises the important contributions that the many different disciplines of the contributing authors make towards understanding this process of navigation. It provides a summary of the book and its structure and the place of the text in the wider Health, Technology and Society Series.
This chapter argues that personal health narratives (PHN) work as a narrative genre of key importance in present day society. As society has become digital and global, personal stories have entered the public sphere through homepages and social media. In addition, societal institutions (the media as well as a variety of public and private institutions) use PHN when communicating content. As the PHN is used for different purposes in different contexts we have found it important to argue for discrete PHN sub-genres. Our argument is that the context in which the PHN is told is formative, and that the PHN carries with it aims that differ and carries different meanings of importance. In addition the authorship of a PHN is affected by the context in which it is presented. The examples discussed are drawn from the clinical situation, blogs and edited news media. The chapter draws on folklore, social anthropology and socio-linguistics/discourse analysis to explore these processes, and does so to contribute to the book’s overall understanding of the digital landscape and voices heard therein.
Joachim Allgaier
added a research item
There has been a considerable volume of work which has sought to understand the way in which users of digital systems make sense of them and how they may (or may not) meet their needs, in areas such as health (Nettleton et al. 2005; Koh, et al., 2013; Record et al., 2018), political agency and civic engagement (Vromen et al., 2016) the emergence of forms of ‘digital labour’ (Scholz, 2012), and the broader role of social media and other platforms (Beer, 2017). There has also been work that has examined the online social world as providing a new space through which socio-political and cultural identities can be refashioned, especially in response to relatively strong and explicit localised forms of control, as in China (Chen, 2013) where the virtual, performative national identity can be fashioned (see also Mikula, 2003). More generally, the offline/online relationship has been a common and core theme of social science analysis of the digital. This has led to calls for new approaches to and methodologies that enable better understanding of the engagement with and use of web-based platforms ( e.g. Allgaier and Svalastog 2015) and for a new ethical framework to oversee it (e.g. Aicardi et al., 2018). These issues have been explored through a recently established research network under the rubric of Navigating Knowledge Landscapes (see http://knowledge-landscapes.hiim.hr/ ) which has been especially focused on these issues as they apply to the domain of health and health-seeking behaviour via the web. This Special issue provides an opportunity to broaden and deepen the empirical and conceptual scope and in particular to interrogate this concept of ‘landscape’ and the dynamics and meanings of ‘knowledge’ and its access, creation, curation and use. Building on this range of work, this CfP invites papers that focus directly on the meaning and understanding of the digital landscape. In what way does this notion point up new forms of geographical space that carry distinct cultural, economic and political dimensions? The Journal invites papers that address the following issues: o Is there a specific digital geography and how can we understand this in terms of digital spaces and their production and co-production? o In what ways does the process of navigation create and reproduce specific landscapes and the routes that are taken within the digital space? o How does this geography vary by digital arena – e.g. health, finance, housing, political agency? o What forms of knowledge do we see emerge within this geography and what wider role does it play within contemporary digital cultures? o How do online and offline understandings and forms of knowledge relate to each other? 2 o What does it mean to travel within this geography, and how are its landscapes and their digital topographies formed and reformed? o Do digital geographies have specific forms of temporality and rhythms that reflect distinctive timescapes? o How does the life in the digital landscape work? How is agency acquired and expressed, and how is power established and activated? How are social relations and powers de-constructed and re-constructed? What are the risks? What is the relevance of critical theory? o Does the cultural plurality of the digital society represent a new cultural and economic geography o How is gender performed and mediated within digital landscapes? o How are classical theories of ‘cyberspace’ relevant to a contemporary mapping of the digital landscape? We welcome papers that address these or related themes, with the goal of publishing a high quality issue that interrogates and defines the boundaries and performativity of the digital landscape today. Paper abstracts (250 words max) should be submitted to the corresponding editor by December 14. The Editors will select a number of abstracts for full development as papers before Christmas 2018. Full papers should be submitted by the end of June 2019 for review. The Special Issue will be published in July 2020. Editorial team: Anna Lydia Svalastog Østfold University College Norway, Joachim Allgaier RWTH Aachen University Germany, Andrew Webster SATSU the University of YorkUK, Srecko Gajovic, University of Zagreb Croatia. Corresponding editor: Anna Lydia Svalastog als@hiof.no
Lucia Martinelli
added a research item
This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance of genetic resources in the context of genetic biobanks in Italy is discussed, as an example of the stratification of different inputs and rules: EU law, national law, orders made by authorities and soft law, which need to be integrated with ethical principles, technological strategies and solutions. After providing an overview of the Italian legal regulation of genetic data processing, it considers the fate of genetic material and IP rights in the event of a biobank’s insolvency. To this end, it analyses two case studies: a controversial bankruptcy case which occurred in Sardinia, one of the first examples of private and public partnership biobanks. Another case study considered is the Chris project: an example of partnership between a research institute in Bolzano and the South Tyrolean Health System. Both cases seem to point in the same direction, suggesting expediency of promoting and improving public-private partnerships to manage biological tissues and biotrust to conciliate patent law and public interest.
Lucia Martinelli
added a research item
In contemporary knowledge landscapes, interdisciplinary communication is crucial. In many cases, the interaction among experts of different fields is challenging, especially with regard to controversial definitions at the intersection of law, science, and bioethics. We analyze the legal definitions of the term “embryo” as the result of legal, ethical, as well as scientific implications, at the intertwining of social changes and scientific advancements. We show how embryo is a complex word, which may be interpreted in different ways. Taking into account the latest research advances on early stage embryo development, we focus on the delicate roles of law in balancing differing claims of scientific investigation and bio-ethic concerns. We conclude that sensitive ethical definitions are the synthesis of often competing interests among different disciplines. Moreover, human feelings toward controversial biology innovations should be taken into account.
Anna Lydia Svalastog
added a research item
Digital society has created a new situation that challenges the present discourse on public services. Since it is only a recent phenomenon, digital society has not yet been included in the broader filed of social work education and practice. In the present text, we focus on casework with children. The examples described in the text are taken from Scandinavian experiences and reflect our background and practice in social work with children. However, we dare to say that the situation is more or less the same in the rest of Europe, as illustrated by the presented social work examples and references from wider European context.
Anna Lydia Svalastog
added a project goal
Anna Lydia Svalastog
added 5 research items
Sustainable solutions and political regulation require public discussions, engagement, and dialogue at the interfaces between science and society. The communication and medialization of innovative knowledge is a key aspect for societal engagement, but also a major source of distortion. Knowledge about bio-objects, generated from biomedical and biotechnical research, causes uncertainty and societal controversies about ethics and risk, and new communicative strategies are required to face complex and potentially controversial topics generated by biology innovation, such as in vitro fertilization (IVF), stem cell research, gene therapy, (xeno-) transplantation, biobank research, recombinant pharmaceutics, etc. The amount of innovative knowledge is constantly increasing, and because of the internet, and Open Access initiatives, it is mostly freely available. However, the abundance of information available on the web, together with the fact that almost everybody can distribute information of varying quality on social online media, often leads to an overflow of communication and the situation of communication impasses. The delegation of the public communication of innovative scientific knowledge to public relations (PR) experts adds a further source of distortion in the communication process. Although communication aims at dialogue, this is frequently not achieved due to the variety of communicators involved and their different goals.
Today patients are confronted with an increase in complexity of health-related information, including that on medical procedures, data interpretation, and multifaceted therapeutic strategies. At the same time, there is a justified need to simplify information in order to enable patients to make decisions about themselves (1). The patient is indeed the only one in the system who possesses all the information and insights into her/his health and biomedical biography. Health related issues are important not only to patients, but to all citizens who take health into consideration when making everyday lifestyle decisions, such as choice of diet, or physical or social activities. As we live in a society full of opportunities, navigating wisely through them, and making educated decisions, clearly requires more steps than just declaratively empowering the patient by the medical system. An important prerequisite for patient-centered medicine is ensuring that patients can find and make use of high-quality knowledge about science and biomedicine.