Using Data for COVID-19 Requires New and Innovative Governance Approaches

Stefaan G. Verhulst and Andrew Zahuranec at Data & Policy blog: “There has been a rapid increase in the number of data-driven projects and tools released to contain the spread of COVID-19. Over the last three months, governments, tech companies, civic groups, and international agencies have launched hundreds of initiatives. These efforts range from simple visualizations of public health data to complex analyses of travel patterns.

When designed responsibly, data-driven initiatives could provide the public and their leaders the ability to be more effective in addressing the virus. The Atlantic andNew York Times have both published work that relies on innovative data use. These and other examples, detailed in our #Data4COVID19 repository, can fill vital gaps in our understanding and allow us to better respond and recover to the crisis.

But data is not without risk. Collecting, processing, analyzing and using any type of data, no matter how good intention of its users, can lead to harmful ends. Vulnerable groups can be excluded. Analysis can be biased. Data use can reveal sensitive information about people and locations. In addressing all these hazards, organizations need to be intentional in how they work throughout the data lifecycle.

Decision Provenance: Documenting decisions and decision makers across the Data Life Cycle

Unfortunately the individuals and teams responsible for making these design decisions at each critical point of the data lifecycle are rarely identified or recognized by all those interacting with these data systems.

The lack of visibility into the origins of these decisions can impact professional accountability negatively as well as limit the ability of actors to identify the optimal intervention points for mitigating data risks and to avoid missed use of potentially impactful data. Tracking decision provenance is essential.

As Jatinder Singh, Jennifer Cobbe, and Chris Norval of the University of Cambridge explain, decision provenance refers to tracking and recording decisions about the collection, processing, sharing, analyzing, and use of data. It involves instituting mechanisms to force individuals to explain how and why they acted. It is about using documentation to provide transparency and oversight in the decision-making process for everyone inside and outside an organization.

Toward that end, The GovLab at NYU Tandon developed the Decision Provenance Mapping. We designed this tool for designated data stewards tasked with coordinating the responsible use of data across organizational priorities and departments….(More)”

Google searches are no substitute for systematic reviews when it comes to policymaking

Article by Peter Bragge: “With all public attention on the COVID-19 pandemic, it is easy to forget that Australia suffered traumatic bushfires last summer, and that a royal commission is investigating the fires and will report in August. According to its Terms of Reference, the commission will examine how Australia’s national and state governments can improve the ‘preparedness for, response to, resilience to and recovery from, natural disasters.’

Many would assume that the commission will identify and use all best-available research knowledge from around the world. But this is highly unlikely because royal commissions are not designed in a way that is fit-for-purpose in the 21st century. Specifically, their terms of reference do not mandate the inclusion of knowledge from world-leading research, even though such research has never been more accessible. This design failure provides critical lessons not only for future royal commissions and public inquiries but for public servants developing policy, including for the COVID-19 crisis, and for academics, journalists, and all researchers who want to keep up with the best global thinking in their field.

The risk of not employing research knowledge that could shape policy and practice could be significantly reduced if the royal commission drew upon what are known as systematic reviews. These are a type of literature review that identify, evaluate and summarise the findings and quality of all known research studies on a particular topic. Systematic reviews provide an overall picture of an entire body of research, rather than one that is skewed by accessing only one or two studies in an area. They are the most thorough form of inquiry, because they control for the ‘outlier’ effect of one or two studies that do not align with the weight of the identified research.

Systematic reviews are known as the ‘peak of peaks’ of research knowledge

They became mainstream in the 1990s through the Cochrane Collaboration – an independent organisation originating in Britain but now worldwide — which has published thousands of systematic reviews across all areas of medicine. These and other medical systematic reviews have been critical in driving best practice healthcare around the world. The approach has expanded to business and management, the law, international development, education, environmental conservation, health service delivery and how to tackle the 17 United Nations Sustainable Development Goals.

There are now tens of thousands of systematic reviews spanning all these areas. Researchers who use them can spend much less time navigating the vastly larger volume of up to 80 million individual research studies published since 1665.

Sadly, they are not. Few policymakers, decision-makers and media are using systematic reviews to respond to complex challenges. Instead, they are searching Google, and hoping that something useful will turn up amongst an estimated 6.19 billion web pages.

The vastness of the open web is an understandable temptation for the time poor, and a great way to find a good local eatery. But it’s a terrible way to try and access relevant, credible knowledge, and an enormous risk for those seeking to address hugely difficult problems, such as responding to Australia’s bushfires.

The deep expertise of specialist professionals and academics is critical to solving complex societal challenges. Yet the standard royal commission approach of using a few experts as a proxy for the world’s knowledge is selling short both their expertise and the commission process. If experts called before the bushfire royal commission could be asked to contribute not just their own expertise, but a response to the applicability of systematic review research to Australia, the commission’s thinking could benefit hugely from harnessing the knowledge both of the reviews and of the experts…(More)”.

Digital Life

Book by Tim Markham: “Conventional wisdom suggests that the pervasiveness of digital media into our everyday lives is undermining cherished notions of politics and ethics. Is this concern unfounded?

In this daring new book, Tim Markham argues that what it means to live ethically and politically is realized through, not in spite of, the everyday experience of digital life. Drawing on a wide range of philosophers from Hegel and Heidegger to Levinas and Butler, he investigates what is really at stake amid the constant distractions of our media-saturated world, the way we present ourselves to that world through social media, and the relentless march of data into every aspect of our lives.

A provocation to think differently about digital media and what it is doing to us, Digital Life offers timely insights into distraction and compassion fatigue, privacy and surveillance, identity and solidarity. It is essential reading for scholars and advanced students of media and communication…(More)”.

Beyond Western, Educated, Industrial, Rich, and Democratic (WEIRD) Psychology: Measuring and Mapping Scales of Cultural and Psychological Distance

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Beyond Western, Educated, Industrial, Rich, and Democratic (WEIRD) Psychology: Measuring and Mapping Scales of Cultural and Psychological Distance

Article by Michael Muthukrishna et al: “In this article, we present a tool and a method for measuring the psychological and cultural distance between societies and creating a distance scale with any population as the point of comparison. Because psychological data are dominated by samples drawn from Western, educated, industrialized, rich, and democratic (WEIRD) nations, and overwhelmingly, the United States, we focused on distance from the United States. We also present distance from China, the country with the largest population and second largest economy, which is a common cultural comparison. We applied the fixation index (FST), a meaningful statistic in evolutionary theory, to the World Values Survey of cultural beliefs and behaviors.

As the extreme WEIRDness of the literature begins to dissolve, our tool will become more useful for designing, planning, and justifying a wide range of comparative psychological projects. Our code and accompanying online application allow for comparisons between any two countries. Analyses of regional diversity reveal the relative homogeneity of the United States. Cultural distance predicts various psychological outcomes….(More)”.

An introduction to human rights for the mobile sector

Report by the GSMA: “Human rights risks are present throughout mobile operators’ value chains. These range from the treatment and conditions of people working in the supply chain to how operators’ own employees are treated and how the human rights of customers are respected online.

This summary provides a high-level introduction to the most salient human rights issues for mobile operators. The aim is to explain why the issues are relevant for operators and share initial practical guidance for companies beginning to focus and respond to human rights issues….(More)”.

Digital Identity and the Blockchain: Universal Identity Management and the Concept of the “Self-Sovereign” Individual

Paper by Andrej J. Zwitter, Oskar J. Gstrein and Evan Yap: “While “classical” human identity has kept philosophers busy since millennia, “Digital Identity” seems primarily machine related. Telephone numbers, E-Mail inboxes, or Internet Protocol (IP)-addresses are irrelevant to define us as human beings at first glance. However, with the omnipresence of digital space the digital aspects of identity gain importance.

In this submission, we aim to put recent developments in context and provide a categorization to frame the landscape as developments proceed rapidly. First, we present selected philosophical perspectives on identity. Secondly, we explore how the legal landscape is approaching identity from a traditional dogmatic perspective both in national and international law. After blending the insights from those sections together in a third step, we will go on to describe and discuss current developments that are driven by the emergence of new tools such as “Distributed Ledger Technology” and “Zero Knowledge Proof.”

One of our main findings is that the management of digital identity is transforming from a purpose driven necessity toward a self-standing activity that becomes a resource for many digital applications. In other words, whereas traditionally identity is addressed in a predominantly sectoral fashion whenever necessary, new technologies transform digital identity management into a basic infrastructural service, sometimes even a commodity. This coincides with a trend to take the “control” over identity away from governmental institutions and corporate actors to “self-sovereign individuals,” who have now the opportunity to manage their digital self autonomously.

To make our conceptual statements more relevant, we present several already existing use cases in the public and private sector. Subsequently, we discuss potential risks that should be mitigated in order to create a desirable relationship between the individual, public institutions, and the private sector in a world where self-sovereign identity management has become the norm. We will illustrate these issues along the discussion around privacy, as well as the development of backup mechanisms for digital identities. Despite the undeniable potential for the management of identity, we suggest that particularly at this point in time there is a clear need to make detailed (non-technological) governance decisions impacting the general design and implementation of self-sovereign identity systems….(More)” – See also Field Report: On the Emergent Use of Distributed Ledger Technologies for Identity Management.

Canadian smart cities: Are we wiring new citizen‐local government interactions?

Paper by Peter A. Johnson, Albert Acedo and Pamela J. Robinson: “Governments around the world are developing smart city projects, with the aim to realize diverse goals of increased efficiency, sustainability, citizen engagement, and improved delivery of services. The processes through which these projects are conceptualized vary dramatically, with potential implications for how citizens are involved or engaged.

This research examines the 20 finalists in the Canadian Smart Cities Challenge, a Canadian federal government contest held from 2017 to 2019 to disburse funding in support of smart city projects. We analyzed each of the finalist proposals, coding all instances of citizen engagement used to develop the proposal. A significant majority of the proposals used traditional types of citizen engagement, notably citizen meetings, round tables, and workshops, to develop their smart city plans. We also noted the use of transactional forms of citizen engagement, such as apps, and the use of social media. Despite the general rhetoric of innovation in the development of smart cities, this research finds that citizens are most commonly engaged in traditional ways. This research provides cues for governments that are developing smart city projects, placing an emphasis on the importance of the process of smart city development, and not simply the product….(More)”.

Standards and Innovations in Information Technology and Communications

Book by Dina Šimunić and Ivica Pavić: “This book gives a thorough explanation of standardization, its processes, its life cycle, and its related organization on a national, regional and global level. The book provides readers with an insight in the interaction cycle between standardization organizations, government, industry, and consumers. The readers can gain a clear insight to standardization and innovation process, standards, and innovations life-cycle and the related organizations with all presented material in the field of information and communications technologies. The book introduces the reader to understand perpetual play of standards and innovation cycle, as the basis for the modern world.

  • Provides a thorough explanation of standardization and innovation in relation to communications engineering and information technology
  • Discusses the standardization and innovation processes and organizations on global, regional, and national levels
  • Interconnects standardization and innovation, showing the perpetual life-cycle that is the basis of technology progress…(More)”.

Digital Contact Tracing for Pandemic Response: Ethics and Governance Guidance

Book edited by Jeffrey Kahn and Johns Hopkins Project on Ethics and Governance of Digital Contact Tracing Technologies: “As public health professionals around the world work tirelessly to respond to the COVID-19 pandemic, it is clear that traditional methods of contact tracing need to be augmented in order to help address a public health crisis of unprecedented scope. Innovators worldwide are racing to develop and implement novel public-facing technology solutions, including digital contact tracing technology. These technological products may aid public health surveillance and containment strategies for this pandemic and become part of the larger toolbox for future infectious outbreak prevention and control.

As technology evolves in an effort to meet our current moment, Johns Hopkins Project on Ethics and Governance of Digital Contact Tracing Technologies—a rapid research and expert consensus group effort led by Dr. Jeffrey Kahn of the Johns Hopkins Berman Institute of Bioethics in collaboration with the university’s Center for Health Security—carried out an in-depth analysis of the technology and the issues it raises. Drawing on this analysis, they produced a report that includes detailed recommendations for technology companies, policymakers, institutions, employers, and the public. The project brings together perspectives from bioethics, health security, public health, technology development, engineering, public policy, and law to wrestle with the complex interactions of the many facets of the technology and its applications. This team of experts from Johns Hopkins University and other world-renowned institutions has crafted clear and detailed guidelines to help manage the creation, implementation, and application of digital contact tracing. Digital Contact Tracing Technology for Pandemic Response is the essential resource for this fast-moving crisis…(More)”.

Why open science is critical to combatting COVID-19

Article by the OECD: “…In January 2020, 117 organisations – including journals, funding bodies, and centres for disease prevention – signed a statement titled “Sharing research data and findings relevant to the novel coronavirus outbreakcommitting to provide immediate open access for peer-reviewed publications at least for the duration of the outbreak, to make research findings available via preprint servers, and to share results immediately with the World Health Organization (WHO). This was followed in March by the Public Health Emergency COVID-19 Initiative, launched by 12 countries1 at the level of chief science advisors or equivalent, calling for open access to publications and machine-readable access to data related to COVID-19, which resulted in an even stronger commitment by publishers.

The Open COVID Pledge was launched in April 2020 by an international coalition of scientists, lawyers, and technology companies, and calls on authors to make all intellectual property (IP) under their control available, free of charge, and without encumbrances to help end the COVID-19 pandemic, and reduce the impact of the disease….

Remaining challenges

While clinical, epidemiological and laboratory data about COVID-19 is widely available, including genomic sequencing of the pathogen, a number of challenges remain:

  • All data is not sufficiently findable, accessible, interoperable and reusable (FAIR), or not yet FAIR data.
  • Sources of data tend to be dispersed, even though many pooling initiatives are under way, curation needs to be operated “on the fly”.
  • Providing access to personal health record sharing needs to be readily accessible, pending the patient’s consent. Legislation aimed at fostering interoperability and avoiding information blocking are yet to be passed in many OECD countries. Access across borders is even more difficult under current data protection frameworks in most OECD countries.
  • In order to achieve the dual objectives of respecting privacy while ensuring access to machine readable, interoperable and reusable clinical data, the Virus Outbreak Data Network (VODAN) proposes to create FAIR data repositories which could be used by incoming algorithms (virtual machines) to ask specific research questions.
  • In addition, many issues arise around the interpretation of data – this can be illustrated by the widely followed epidemiological statistics. Typically, the statistics concern “confirmed cases”, “deaths” and “recoveries”. Each of these items seem to be treated differently in different countries, and are sometimes subject to methodological changes within the same country.
  • Specific standards for COVID-19 data therefore need to be established, and this is one of the priorities of the UK COVID-19 Strategy. A working group within Research Data Alliance has been set up to propose such standards at an international level.
  • In some cases it could be inferred that the transparency of the statistics may have guided governments to restrict testing in order to limit the number of “confirmed cases” and avoid the rapid rise of numbers. Lower testing rates can in turn reduce the efficiency of quarantine measures, lowering the overall efficiency of combating the disease….(More)”.