Surveillance and the ‘New Normal’ of Covid-19: Public Health, Data, and Justice

Curated on Posted on by Stefaan Verhulst

Report by the Social Science Research Council: “The Covid-19 pandemic has dramatically altered the way nations around the world use technology in public health. As the virus spread globally, some nations responded by closing businesses, shuttering schools, limiting gatherings, and banning travel. Many also deployed varied technological tools and systems to track virus exposure, monitor outbreaks, and aggregate hospital data.

Some regions are still grappling with crisis-level conditions, and others are struggling to navigate the complexities of vaccine rollouts. Amid the upheavals, communities are adjusting to a new normal, in which mask-wearing has become as commonplace as seatbelt use and digital temperature checks are a routine part of entering public buildings.

Even as the frenzy of emergency responses begins to subside, the emergent forms of surveillance that have accompanied this new normal persist. As a consequence, societies face new questions about how to manage the monitoring systems created in response to the virus, what processes are required in order to immunize populations, and what new norms the systems have generated. How they answer these questions will have long-term impacts on civil liberties, governance, and the role of technology in society. The systems implemented amid the public health emergency could jeopardize individual freedoms and exacerbate harms to already vulnerable groups, particularly if they are adapted to operate as permanent social management tools. At the same time, growing public awareness about the impact of public health technologies could also provide a catalyst for strengthening democratic engagement and demonstrating the urgency of improving governance systems. As the world transitions in and out of pandemic crisis modes, there is an opportunity to think broadly about strengthening public health systems, policymaking, and the underlying structure of our social compacts.

The stakes are high: an enduring lesson from history is that moments of crisis often recast the roles of governments and the rights of individuals. Moments of crisis often recast the roles of governments and the rights of individuals.In this moment of flux, the Social Science Research Council calls on policymakers, technologists, data scientists, health experts, academics, activists, and communities around the world to assess the implications of this transformation and seize opportunities for positive social change. The Council seeks to facilitate a shift from reactive modes of crisis response to more strategic forms of deliberation among varied stakeholders. As such, it has convened discussions and directed research in order to better understand the intersection of governance and technologically enabled surveillance in conditions of public health emergencies. Through these activities, the Council aims to provide analysis that can help foster societies that are more resilient, democratic, and inclusive and can, therefore, better withstand future crises.

With these goals in mind, the Council convened a cross-disciplinary, multinational group of experts in the summer of 2020 to survey the landscape of human rights and social justice with regard to technologically driven public health practices. The resulting group—the Public Health, Surveillance, and Human Rights (PHSHR) Network—raised a broad range of questions about governance, social inequalities, data protection, medical systems, and community norms: What rules should govern the sharing of personal health data? How should the efficacy of public health interventions be weighed against the emergence and expansion of new forms of surveillance? How much control should multinational corporations have in designing and implementing nations’ public health technology systems? These are among the questions that pushed members to think beyond traditional professional, geographic, and intellectual boundaries….(More)”.

The Power of Virtual Communities

Curated on Posted on by Stefaan Verhulst

Report by The GovLab: “When India went into lockdown in response to the COVID-19 pandemic, restrictions on movement affected people’s access to medicine, food and other supplies that they relied upon. HIV/AIDS sufferers feared traveling to clinics and labs to pick up their medication. Needing help, many turned to HumanKind Global, a new network of thousands of volunteers who coordinate aid through a Facebook Group and WhatsApp (also owned by Facebook).

Mahita Nagaraj, 39, a self-employed digital marketing professional and single mother based in Bangalore, created the group in March 2020. In just four weeks, HumanKind Global volunteers delivered lifesaving HIV medicines to more than 170 people across India. It has since grown to more than 50,000 members. Answering more than 25,000 requests for help, these volunteers have coordinated blood donations, delivered life-saving medication and provided people stranded at home with enough food to eat.

HumanKind Global is an online group, a form of human organization that is expanding at a remarkable scale and speed. Online groups exist for many reasons. Some offer lifesaving support while others enable people—whether they life next door or across an ocean—to trade articles, jokes, photographs, insults, ideas, advice, information, and sometimes misinformation. The space in which contemporary online groups are active is at once global and local, intimate and vast. A post can reach two million people, or spark a conversation between just two. Governed by their own members and the policies of the platforms on which they are hosted, these groups have diverse rules that seek to create a space in which their members can connect supported by feelings of belonging, intimacy and trust.

Online groups like HumanKind Global can be found on many platforms. There are discussion groups on Reddit, artist colonies on LEGO Mindstorms, player groups on gaming platforms like Twitch, or parenting groups in which members go online to organize real-life meetings through MeetUp. But in this report we study Facebook Groups, specifically, as one category of online group….(More)”. (See also: https://virtual-communities.thegovlab.org/)

Copenhagen Manual

Curated on Posted on by Stefaan Verhulst

About: “The Copenhagen Manual is a helping hand for those who are in a position to further data-informed strategies for public sector development or have been given the responsibility for preparing, analysing or communicating a survey on public sector innovation.

Like other instruction manuals, the Copenhagen Manual offers examples of use, handy tips and general warnings. The manual discusses setting strategic goals, communication, reaching respondents, adapting the questionnaire and defining public sector innovation.

Internationally comparable data

The manual offers an opportunity to mirror public sector innovation capacity by way of internationally comparable data. The Copenhagen Manual, with emphasis on the ‘open’ in Copenhagen is:

  • the result of an open co-creation process that welcomed the participation of all interested parties
  • based on the open sharing of a multitude of experiences, good and bad
  • open to interpretation, making it usable in different national contexts and open to continuous discussion of added practical experience as actors from more countries conduct surveys on public sector innovation…(More)”.

A New Way to Inoculate People Against Misinformation

Curated on Posted on by Stefaan Verhulst

Article by Jon Roozenbeek, Melisa Basol, and Sander van der Linden: “From setting mobile phone towers on fire to refusing critical vaccinations, we know the proliferation of misinformation online can have massive, real-world consequences.

For those who want to avert those consequences, it makes sense to try and correct misinformation. But as we now know, misinformation—both intentional and unintentional—is difficult to fight once it’s out in the digital wild. The pace at which unverified (and often false) information travels makes any attempt to catch up to, retrieve, and correct it an ambitious endeavour. We also know that viral information tends to stick, that repeated misinformation is more likely to be judged as true, and that people often continue to believe falsehoods even after they have been debunked.

Instead of fighting misinformation after it’s already spread, some researchers have shifted their strategy: they’re trying to prevent it from going viral in the first place, an approach known as “prebunking.” Prebunking attempts to explain how people can resist persuasion by misinformation. Grounded in inoculation theory, the approach uses the analogy of biological immunization. Just as weakened exposure to a pathogen triggers antibody production, inoculation theory posits that pre-emptively exposing people to a weakened persuasive argument builds people’s resistance against future manipulation.

But while inoculation is a promising approach, it has its limitations. Traditional inoculation messages are issue-specific, and have often remained confined to the particular context that you want to inoculate people against. For example, an inoculation message might forewarn people that false information is circulating encouraging people to drink bleach as a cure for the coronavirus. Although that may help stop bleach drinking, this messaging doesn’t pre-empt misinformation about other fake cures. As a result, prebunking approaches haven’t easily adapted to the changing misinformation landscape, making them difficult to scale.

However, our research suggests that there may be another way to inoculate people that preserves the benefits of prebunking: it may be possible to build resistance against misinformation in general, rather than fighting it one piece at a time….(More)”.

Revenge of the Experts: Will COVID-19 Renew or Diminish Public Trust in Science?

Curated on Posted on by Stefaan Verhulst

Paper by Barry Eichengreen, Cevat Aksoy and Orkun Saka: “It is sometimes said that an effect of the COVID-19 pandemic will be heightened appreciation of the importance of scientific research and expertise. We test this hypothesis by examining how exposure to previous epidemics affected trust in science and scientists. Building on the “impressionable years hypothesis” that attitudes are durably formed during the ages 18 to 25, we focus on individuals exposed to epidemics in their country of residence at this particular stage of the life course. Combining data from a 2018 Wellcome Trust survey of more than 75,000 individuals in 138 countries with data on global epidemics since 1970, we show that such exposure has no impact on views of science as an endeavor but that it significantly reduces trust in scientists and in the benefits of their work. We also illustrate that the decline in trust is driven by the individuals with little previous training in science subjects. Finally, our evidence suggests that epidemic-induced distrust translates into lower compliance with health-related policies in the form of negative views towards vaccines and lower rates of child vaccination….(More)”.

Inside the ‘Wikipedia of Maps,’ Tensions Grow Over Corporate Influence

Curated on Posted on by Stefaan Verhulst

Corey Dickinson at Bloomberg: “What do Lyft, Facebook, the International Red Cross, the U.N., the government of Nepal and Pokémon Go have in common? They all use the same source of geospatial data: OpenStreetMap, a free, open-source online mapping service akin to Google Maps or Apple Maps. But unlike those corporate-owned mapping platforms, OSM is built on a network of mostly volunteer contributors. Researchers have described it as the “Wikipedia for maps.”

Since it launched in 2004, OpenStreetMap has become an essential part of the world’s technology infrastructure. Hundreds of millions of monthly users interact with services derived from its data, from ridehailing apps, to social media geotagging on Snapchat and Instagram, to humanitarian relief operations in the wake of natural disasters. 

But recently the map has been changing, due the growing impact of private sector companies that rely on it. In a 2019 paper published in the ISPRS International Journal of Geo-Information, a cross-institutional team of researchers traced how Facebook, Apple, Microsoft and other companies have gained prominence as editors of the map. Their priorities, the researchers say, are driving significant change to what is being mapped compared to the past. 

“OpenStreetMap’s data is crowdsourced, which has always made spectators to the project a bit wary about the quality of the data,” says Dipto Sarkar, a professor of geoscience at Carleton University in Ottawa, and one of the paper’s co-authors. “As the data becomes more valuable and is used for an ever-increasing list of projects, the integrity of the information has to be almost perfect. These companies need to make sure there’s a good map of the places they want to expand in, and nobody else is offering that, so they’ve decided to fill it in themselves.”…(More)”.

Future of Vulnerability: Humanity in the Digital Age

Curated on Posted on by Stefaan Verhulst

Report by the Australian Red Cross: “We find ourselves at the crossroads of humanity and technology. It is time to put people and society at the centre of our technological choices. To ensure that benefits are widely shared. To end the cycle of vulnerable groups benefiting least and being harmed most by new technologies.

There is an agenda for change across research, policy and practice towards responsible, inclusive and ethical uses of data and technology.
People and civil society must be at the centre of this work, involved in generating insights and developing prototypes, in evidence-based decision-making about impacts, and as part of new ‘business as usual’.

The Future of Vulnerability report invites a conversation around the complex questions that all of us collectively need to ask about the vulnerabilities frontier technologies can introduce or heighten. It also highlights opportunities for collaborative exploration to develop and promote ‘humanity first’ approaches to data and technology….(More)”.

Critical Perspectives on Open Development

Curated on Posted on by Stefaan Verhulst

Book edited by Arul Chib, Caitlin M. Bentley, and Matthew L. Smith: “Over the last ten years, “open” innovations—the sharing of information and communications resources without access restrictions or cost—have emerged within international development. But do these innovations empower poor and marginalized populations? This book examines whether, for whom, and under what circumstances the free, networked, public sharing of information and communication resources contribute (or not) toward a process of positive social transformation. The contributors offer cross-cutting theoretical frameworks and empirical analyses that cover a broad range of applications, emphasizing the underlying aspects of open innovations that are shared across contexts and domains.

The book first outlines theoretical frameworks that span knowledge stewardship, trust, situated learning, identity, participation, and power decentralization. It then investigates these frameworks across a range of institutional and country contexts, considering each in terms of the key emancipatory principles and structural impediments it seeks to address. Taken together, the chapters offer an empirically tested theoretical direction for the field….(More)”.

Collective bargaining on digital platforms and data stewardship

Curated on Posted on by Stefaan Verhulst

Paper by Astha Kapoor: “… there is a need to think of exploitation on platforms not only through the lens of labour rights but also that of data rights. In the current context, it is impossible to imagine well-being without more agency on the way data are collected, stored and used. It is imperative to envision structures through which worker communities and representatives can be more involved in determining their own data lives on platforms. There is a need to organize and mobilize workers on data rights.

One of the ways in which this can be done is through a mechanism of community data stewards who represent the needs and interests of workers to their platforms, thus negotiating and navigating the data-based decisions. This paper examines the need for data rights as a critical requirement for worker well-being in the platform economy and the ways in which it can be actualized. It argues, given that workers on platforms produce data through collective labour on and off the platform, that worker data are a community resource and should be governed by representatives of workers who can negotiate with platforms on the use of that data for workers and for the public interest. The paper analyses the opportunity for a community data steward mechanism that represents workers’ interests and intermediates on data issues, such as transparency and accountability, with offline support systems. And is also a voice to online action to address some of the injustices of the data economy. Thus, a data steward is a tool through which workers better control their data—consent, privacy and rights—better and organize online. Essentially, it is a way forward for workers to mobilize collective bargaining on data rights.

The paper covers the impact of the COVID-19 pandemic on workers’ rights and well-being. It explores the idea of community data rights on the platform economy and why collective bargaining on data is imperative for any kind of meaningful negotiation with technology companies. The role of a community data steward in reclaiming workers’ power in the platform economy is explained, concluding with policy recommendations for a community data steward structure in the Indian context….(More)”.

Public-Private Partnerships: Compound and Data Sharing in Drug Discovery and Development

Curated on Posted on by Stefaan Verhulst

Paper by Andrew M. Davis et al: “Collaborative efforts between public and private entities such as academic institutions, governments, and pharmaceutical companies form an integral part of scientific research, and notable instances of such initiatives have been created within the life science community. Several examples of alliances exist with the broad goal of collaborating toward scientific advancement and improved public welfare. Such collaborations can be essential in catalyzing breaking areas of science within high-risk or global public health strategies that may have otherwise not progressed. A common term used to describe these alliances is public-private partnership (PPP). This review discusses different aspects of such partnerships in drug discovery/development and provides example applications as well as successful case studies. Specific areas that are covered include PPPs for sharing compounds at various phases of the drug discovery process—from compound collections for hit identification to sharing clinical candidates. Instances of PPPs to support better data integration and build better machine learning models are also discussed. The review also provides examples of PPPs that address the gap in knowledge or resources among involved parties and advance drug discovery, especially in disease areas with unfulfilled and/or social needs, like neurological disorders, cancer, and neglected and rare diseases….(More)”.