research paper / thesis / dissertation

Developing Global Norms for Sharing Data and Results during Public Health Emergencies

Curated on January 5, 2016August 3, 2018 by Stefaan Verhulst

Paper by Kayvon Modjarrad et al in PLOS Med: “…When a new or re-emergent pathogen causes a major outbreak, rapid access to both raw and analysed data or other pertinent research findings becomes critical to developing a rapid and effective public health response. Without the timely exchange of information on clinical, epidemiologic, and molecular features of an infectious disease, informed decisions about appropriate responses cannot be made, particularly those that relate to fielding new interventions or adapting existing ones. Failure to share information in a timely manner can have disastrous public health consequences, leading to unnecessary suffering and death. The 2014–2015 Ebola epidemic in West Africa revealed both successful practices and important deficiencies within existing mechanisms for information sharing. For example, trials of two Ebola vaccine candidates (ChAd3-ZEBOV and rVSV-ZEBOV) benefited greatly from an open collaboration between investigators and institutions in Africa, Europe, and North America . These teams, coordinated by the WHO, were able to generate and exchange critical data for the development of urgently needed, novel vaccines along faster timelines than have ever before been achieved. Similarly, some members of the genome sequencing community made viral sequence data publicly available within days of accessing samples , thus adhering to their profession’s long-established principles of rapid, public release of sequence data in any setting. In contrast, the dissemination of surveillance data early in the epidemic was comparatively slow, and in some cases, the criteria for sharing were unclear.

In recognition of the need to streamline mechanisms of data dissemination—globally and in as close to real-time as possible—the WHO held a consultation in Geneva, Switzerland, on 1–2 September 2015 to advance the development of data sharing norms, specifically in the context of public health emergencies….

preservation of global health requires prioritization of and support for international collaboration. These and other principles were affirmed at the consultation (Table 1) and codified into a consensus statement that was published on the WHO website immediately following the meeting (http://www.who.int/medicines/ebola-treatment/data-sharing_phe/en/). A more comprehensive set of principles and action items was made available in November 2015, including the consensus statement made by the editorial staff of journals that attended the meeting (http://www.who.int/medicines/ebola-treatment/blueprint_phe_data-share-results/en/). The success of prior initiatives to accelerate timelines for reporting clinical trial results has helped build momentum for a broader data sharing agenda. As the quick and transparent dissemination of information is the bedrock of good science and public health practice, it is important that the current trends in data sharing carry over to all matters of acute public health need. Such a global norm would advance the spirit of open collaboration, simplify current mechanisms of information sharing, and potentially save many lives in subsequent outbreaks….(More)”

The Power of the Nudge to Change Our Energy Future

Curated on January 4, 2016August 3, 2018 by Stefaan Verhulst

Sebastian Berger in the Scientific American: “More than ever, psychology has become influential not only in explaining human behavior, but also as a resource for policy makers to achieve goals related to health, well-being, or sustainability. For example, President Obama signed an executive order directing the government to systematically use behavioral science insights to “better serve the American people.” Not alone in this endeavor, many governments – including the UK, Germany, Denmark, or Australia – are turning to the insights that most frequently stem from psychological researchers, but also include insights from behavioral economics, sociology, or anthropology.

Particularly relevant are the analysis and the setting of “default-options.” A default is the option that a decision maker receives if he or she does not specifically state otherwise. Are we automatically enrolled in a 401(k), are we organ donors by default, or is the flu-shot a standard that is routinely given to all citizens? Research has given us many examples of how and when defaults can promote public safety or wealth.

One of the most important questions facing the planet, however, is how to manage the transition into a carbon-free economy. In a recent paper, Felix Ebeling of the University of Cologne and I tested whether defaults could nudge consumers into choosing a green energy contract over one that relies on conventional energy. The results were striking: setting the default to green energy increased participation nearly tenfold. This is an important result because it tells us that subtle, non-coercive changes in the decision making environment are enough to show substantial differences in consumers’ preferences in the domain of clean energy. It changes green energy participation from “hardly anyone” to “almost everyone”. Merely within the domain of energy behavior, one can think of many applications where this finding can be applied: For instance, default engines of new cars could be set to hybrid and customers would need to actively switch to standard options. Standard temperatures of washing machines could be low, etc….(More)”

Digital Weberianism: Towards a reconceptualization of bureaucratic social order in the digital age

Curated on December 30, 2015October 10, 2018 by Stefaan Verhulst

Working Paper by Chris Muellerleile & Susan Robertson: “The social infrastructures that the global economy relies upon are becoming dependent on digital code, big data, and algorithms. At the same time the digital is also changing the very nature of economic and social institutions. In this paper we attempt to make sense of the relationships between the emergence of digitalism, and transformations in both capitalism, and the ways that capitalism is regulated by digitized social relations. We speculate that the logic, rationalities, and techniques of Max Weber’s bureau, a foundational concept in his theory of modernity, helps explain the purported efficiency, objectivity, and rationality of digital technologies. We argue that digital rationality constitutes a common thread of social infrastructure that is increasingly overdetermining the nature of sociality. We employ the example of the smart city and the digitizing university to expose some of the contradictions of digital order, and we end by questioning what digital order might mean after the end of modernity….(More)”

Privacy in Public Spaces: What Expectations of Privacy Do We Have in Social Media Intelligence?

Curated on December 16, 2015August 3, 2018 by Stefaan Verhulst

Paper by Edwards, Lilian and Urquhart, Lachlan: “In this paper we give a basic introduction to the transition in contemporary surveillance from top down traditional police surveillance to profiling and “pre-crime” methods. We then review in more detail the rise of open source (OSINT) and social media (SOCMINT) intelligence and its use by law enforcement and security authorities. Following this we consider what if any privacy protection is currently given in UK law to SOCMINT. Given the largely negative response to the above question, we analyse what reasonable expectations of privacy there may be for users of public social media, with reference to existing case law on art 8 of the ECHR. Two factors are in particular argued to be supportive of a reasonable expectation of privacy in open public social media communications: first, the failure of many social network users to perceive the environment where they communicate as “public”; and secondly, the impact of search engines (and other automated analytics) on traditional conceptions of structured dossiers as most problematic for state surveillance. Lastly, we conclude that existing law does not provide adequate protection foropen SOCMINT and that this will be increasingly significant as more and more personal data is disclosed and collected in public without well-defined expectations of privacy….(More)”

Digilantism: An Analysis of Crowdsourcing and the Boston Marathon Bombings

Curated on December 15, 2015November 14, 2018 by Stefaan Verhulst

Paper by Johnny Nhan et al: “This paper explores the aftermath of the Boston Marathon bombing incident and how members of the general public, through the online community Reddit, attempted to provide assistance to law enforcement through conducting their own parallel investigations. As we document through an analysis of user posts, Reddit members shared information about the investigation, searched for information that would identify the perpetrators and, in some cases, drew on their own expert knowledge to uncover clues concerning key aspects of the attack. Although it is the case that the Reddit cyber-sleuths’ did not ultimately solve this case, or provide significant assistance to the police investigation, their actions suggest the potential role the public could play within security networks….(More)”

OpenFDA: an innovative platform providing access to a wealth of FDA’s publicly available data

Curated on December 13, 2015August 3, 2018 by Stefaan Verhulst

Paper by Taha A Kass-Hout et al in JAMIA: “The objective of openFDA is to facilitate access and use of big important Food and Drug Administration public datasets by developers, researchers, and the public through harmonization of data across disparate FDA datasets provided via application programming interfaces (APIs).

Materials and Methods: Using cutting-edge technologies deployed on FDA’s new public cloud computing infrastructure, openFDA provides open data for easier, faster (over 300 requests per second per process), and better access to FDA datasets; open source code and documentation shared on GitHub for open community contributions of examples, apps and ideas; and infrastructure that can be adopted for other public health big data challenges.

Results:Since its launch on June 2, 2014, openFDA has developed four APIs for drug and device adverse events, recall information for all FDA-regulated products, and drug labeling. There have been more than 20 million API calls (more than half from outside the United States), 6000 registered users, 20,000 connected Internet Protocol addresses, and dozens of new software (mobile or web) apps developed. A case study demonstrates a use of openFDA data to understand an apparent association of a drug with an adverse event. Conclusion With easier and faster access to these datasets, consumers worldwide can learn more about FDA-regulated products

Conclusion: With easier and faster access to these datasets, consumers worldwide can learn more about FDA-regulated products…(More)”

Controlling the crowd? Government and citizen interaction on emergency-response platforms

Curated on December 12, 2015August 3, 2018 by Stefaan Verhulst

Gregory Asmolov at the Policy and Internet Blog: “My interest in the role of crowdsourcing tools and practices in emergency situations was triggered by my personal experience. In 2010 I was one of the co-founders of the Russian “Help Map” project, which facilitated volunteer-based response to wildfires in central Russia. When I was working on this project, I realized that a crowdsourcing platform can bring the participation of the citizen to a new level and transform sporadic initiatives by single citizens and groups into large-scale, relatively well coordinated operations. What was also important was that both the needs and the forms of participation required in order to address these needs be defined by the users themselves.

To some extent the citizen-based response filled the gap left by the lack of a sufficient response from the traditional institutions.[1] This suggests that the role of ICTs in disaster response should be examined within the political context of the power relationship between members of the public who use digital tools and the traditional institutions. My experience in 2010 was the first time I was able to see that, while we would expect that in a case of natural disaster both the authorities and the citizens would be mostly concerned about the emergency, the actual situation might be different.

Apparently the emergence of independent, citizen-based collective action in response to a disaster was considered as some type of threat by the institutional actors. First, it was a threat to the image of these institutions, which didn’t want citizens to be portrayed as the leading responding actors. Second, any type of citizen-based collective action, even if not purely political, may be an issue of concern in authoritarian countries in particular. Accordingly, one can argue that, while citizens are struggling against a disaster, in some cases the traditional institutions may make substantial efforts to restrain and contain the action of citizens. In this light, the role of information technologies can include not only enhancing citizen engagement and increasing the efficiency of the response, but also controlling the digital crowd of potential volunteers.

The purpose of this paper was to conceptualize the tension between the role of ICTs in the engagement of the crowd and its resources, and the role of ICTs in controlling the resources of the crowd. The research suggests a theoretical and methodological framework that allows us to explore this tension. The paper focuses on an analysis of specific platforms and suggests empirical data about the structure of the platforms, and interviews with developers and administrators of the platforms. This data is used in order to identify how tools of engagement are transformed into tools of control, and what major differences there are between platforms that seek to achieve these two goals. That said, obviously any platform can have properties of control and properties of engagement at the same time; however the proportion of these two types of elements can differ significantly.

One of the core issues for my research is how traditional actors respond to fast, bottom-up innovation by citizens.[2]. On the one hand, the authorities try to restrict the empowerment of citizens by the new tools. On the other hand, the institutional actors also seek to innovate and develop new tools that can restore the balance of power that has been challenged by citizen-based innovation. The tension between using digital tools for the engagement of the crowd and for control of the crowd can be considered as one of the aspects of this dynamic.

That doesn’t mean that all state-backed platforms are created solely for the purpose of control. One can argue, however, that the development of digital tools that offer a mechanism of command and control over the resources of the crowd is prevalent among the projects that are supported by the authorities. This can also be approached as a means of using information technologies in order to include the digital crowd within the “vertical of power”, which is a top-down strategy of governance. That is why this paper seeks to conceptualize this phenomenon as “vertical crowdsourcing”.

The question of whether using a digital tool as a mechanism of control is intentional is to some extent secondary. What is important is that the analysis of platform structures relying on activity theory identifies a number of properties that allow us to argue that these tools are primarily tools of control. The conceptual framework introduced in the paper is used in order to follow the transformation of tools for the engagement of the crowd into tools of control over the crowd. That said, some of the interviews with the developers and administrators of the platforms may suggest the intentional nature of the development of tools of control, while crowd engagement is secondary….Read the full article: Asmolov, G. (2015) Vertical Crowdsourcing in Russia: Balancing Governance of Crowds and State–Citizen Partnership in Emergency Situations.”

Big Data in the Policy Cycle: Policy Decision Making in the Digital Era

Curated on December 10, 2015August 3, 2018 by Stefaan Verhulst

Paper by Johann Höchtl et al in the Journal of Organizational Computing and Electronic Commerce: “Although of high relevance to political science, the interaction between technological change and political change in the era of Big Data remains somewhat of a neglected topic. Most studies focus on the concept of e-government and e-governance, and on how already existing government activities performed through the bureaucratic body of public administration could be improved by technology. This paper attempts to build a bridge between the field of e-governance and theories of public administration that goes beyond the service delivery approach that dominates a large part of e-government research. Using the policy cycle as a generic model for policy processes and policy development, a new look on how policy decision making could be conducted on the basis of ICT and Big Data is presented in this paper….(More)”

When to Punish, When to Persuade and When to Reward: Strengthening Responsive Regulation with the Regulatory Diamond

Curated on December 9, 2015November 14, 2018 by Stefaan Verhulst

Paper by Jonathan Kolieb: “Originally published over two decades ago, ‘responsive regulation’ and its associated regulatory pyramid have become touchstones in the contemporary study and practice of regulation. Influential ideas and theories about regulation and governance have been developed in the intervening years, yet responsive regulation’s simple pyramidal model continues to resonate with policy-makers and scholars alike. This article seeks to advance the vision and utility of responsive regulation, by responding to several key drawbacks of the original design and by offering an update to the pyramidal model of regulation that lies at the centre of the theory. It argues for a ‘regulatory diamond’ as a strengthened, renewed model for responsive regulation. Rooted within the responsive regulation literature, the regulatory diamond integrates into the one schema both ‘compliance regulation’ and ‘aspirational regulation’, thereby offering a more cohesive representation of the broad conception of regulation that underpins responsive regulation theory, and the limited but vital role of law within it….(More)”