Stefaan Verhulst

Essay by stefania milan and Emiliano Treré at Data & Policy: “If numbers are the conditions of existence of the COVID-19 problem, we ought to pay attention to the actual (in)ability of many countries in the South to test their population for the virus, and to produce reliable population statistics more in general — let alone to adequately care for them. It is a matter of a “data gap” as well as of data quality, which even in “normal” times hinders the need for “evidence-based policy making, tracking progress and development, and increasing government accountability” (Chen et al., 2013). And while the World Health Organization issues warning about the “dramatic situation” concerning the spread of COVID-19 in the African continent, to name just one of the blind spots of our datasets of the global pandemic, the World Economic Forum calls for “flattening the curve” in developing countries. Progress has been made following the revision of the United Nations’ Millennium Development Goals in 2005, with countries in the Global South have been invited (and supported) to devise National Strategies for the Development of Statistics. Yet, a cursory look at the NYU GovLab’s valuable repository of data collaboratives” addressing the COVID-19 pandemic reveals the virtual absence of data collection and monitoring projects in the South of the hemisphere. The next obvious step is the dangerous equation “no data=no problem”.

Disease and “whiteness”

Epidemiology and pharmacogenetics (i.e. the study of the genetic basis of how people respond to pharmaceuticals), to name but a few amongst the number of concerned life sciences, are largely based on the “inclusion of white/Caucasians in studies and the exclusion of other ethnic groups” (Tutton, 2007). In other words, modeling of disease evolution and the related solutions are based on datasets that take into account primarily — and in fact almost exclusively — the caucasian population. This is a known problem in the field, which derives from the “assumption that a Black person could be thought of as being White”, dismissing specificities and differences. This problem has been linked to the “lack of social theory development, due mainly to the reluctance of epidemiologists to think about social mechanisms (e.g., racial exploitation)” (Muntaner, 1999, p. 121). While COVID-19 represents a slight variation on this trend, having been first identified in China, the problem on the large scale remains. And in times of a health emergency as global as this one, risks to be reinforced and perpetuated.

A succulent market for the industry

In the lack of national testing capacity, the developing world might fall prey to the blooming industry of genetic and disease testing, on the one hand, and of telecom-enabled population monitoring on the other. Private companies might be able to fill the gap left by the state, mapping populations at risk — while however monetizing their data. The case of 23andme is symptomatic of this rise of industry-led testing, which constitutes a double-edge sword. On the one hand, private actors might supply key services that resource-poor or failing states are unable to provide. On the other hand, however, the distorted and often hidden agendas of profit-led players reveals its shortcomings and dangers. If we look at the telecom industry, we note how it has contributed to track disease propagation in a number of health emergencies such as Ebola. And if the global open data community has called for smoother data exchange between the private and the public sector to collectively address the spread of the virus,in the absence of adequate regulatory frameworks in the Global South, for example in the field of privacy and data retention, local authorities might fall prey to outside interventions of dubious nature….(More)”.

Pledge: “Immediate action is required to halt the COVID-19 Pandemic and treat those it has affected. It is a practical and moral imperative that every tool we have at our disposal be applied to develop and deploy technologies on a massive scale without impediment.

We therefore pledge to make our intellectual property available free of charge for use in ending the COVID-19 pandemic and minimizing the impact of the disease.

We will implement this pledge through a license that details the terms and conditions under which our intellectual property is made available.

How to make the Pledge

The first step for organizations wishing to make the Pledge is to publicly commit to making intellectual property relevant to COVID-19 freely available, by:

• Posting a public statement that the organization is making the Pledge, on their website. 
• Issuing an official press release.

And then sending us a link to this statement, a point of contact in the organization, and, at the organization’s discretion, a copy of their logo to display on this site.

How to implement the Pledge

The next step for organizations who have made the Pledge is to implement it via a license detailing the terms and conditions under which their intellectual property is made available. There are three options for doing so:

• Adopt the Open COVID License, created by our legal team for organizations that wish to implement the Pledge simply and immediately on terms shared by many other organizations.
• Create a custom license that accomplished the intent of the Pledge.
• Identify existing license(s) that accomplish the goals of the Pledge.

As with making the Pledge, send us links to the license or licenses, a point of contact in the organization, and, at the organization’s discretion, a copy of their logo to display on this site….(More)”.

Norman Fenton, Magda Osman, Martin Neil, and Scott McLachlan at The Conversation: “Suppose we wanted to estimate how many car owners there are in the UK and how many of those own a Ford Fiesta, but we only have data on those people who visited Ford car showrooms in the last year. If 10% of the showroom visitors owned a Fiesta, then, because of the bias in the sample, this would certainly overestimate the proportion of Ford Fiesta owners in the country.

Estimating death rates for people with COVID-19 is currently undertaken largely along the same lines. In the UK, for example, almost all testing of COVID-19 is performed on people already hospitalised with COVID-19 symptoms. At the time of writing, there are 29,474 confirmed COVID-19 cases (analogous to car owners visiting a showroom) of whom 2,352 have died (Ford Fiesta owners who visited a showroom). But it misses out all the people with mild or no symptoms.

Concluding that the death rate from COVID-19 is on average 8% (2,352 out of 29,474) ignores the many people with COVID-19 who are not hospitalised and have not died (analogous to car owners who did not visit a Ford showroom and who do not own a Ford Fiesta). It is therefore equivalent to making the mistake of concluding that 10% of all car owners own a Fiesta.

There are many prominent examples of this sort of conclusion. The Oxford COVID-19 Evidence Service have undertaken a thorough statistical analysis. They acknowledge potential selection bias, and add confidence intervals showing how big the error may be for the (potentially highly misleading) proportion of deaths among confirmed COVID-19 patients.

They note various factors that can result in wide national differences – for example the UK’s 8% (mean) “death rate” is very high compared to Germany’s 0.74%. These factors include different demographics, for example the number of elderly in a population, as well as how deaths are reported. For example, in some countries everybody who dies after having been diagnosed with COVID-19 is recorded as a COVID-19 death, even if the disease was not the actual cause, while other people may die from the virus without actually having been diagnosed with COVID-19.

However, the models fail to incorporate explicit causal explanations in their modelling that might enable us to make more meaningful inferences from the available data, including data on virus testing.

We have developed an initial prototype “causal model” whose structure is shown in the figure above. The links between the named variables in a model like this show how they are dependent on each other. These links, along with other unknown variables, are captured as probabilities. As data are entered for specific, known variables, all of the unknown variable probabilities are updated using a method called Bayesian inference. The model shows that the COVID-19 death rate is as much a function of sampling methods, testing and reporting, as it is determined by the underlying rate of infection in a vulnerable population….(More)”

Alex Engler at Brookings: “The COVID-19 outbreak has spurred considerable news coverage about the ways artificial intelligence (AI) can combat the pandemic’s spread. Unfortunately, much of it has failed to be appropriately skeptical about the claims of AI’s value. Like many tools, AI has a role to play, but its effect on the outbreak is probably small. While this may change in the future, technologies like data reporting, telemedicine, and conventional diagnostic tools are currently far more impactful than AI.

Still, various news articles have dramatized the role AI is playing in the pandemic by overstating what tasks it can perform, inflating its effectiveness and scale, neglecting the level of human involvement, and being careless in consideration of related risks. In fact, the COVID-19 AI-hype has been diverse enough to cover the greatest hits of exaggerated claims around AI. And so, framed around examples from the COVID-19 outbreak, here are eight considerations for a skeptic’s approach to AI claims….(More)”.

Paper by Srushti Wadekar, Kunal Thapar, Komal Barge, Rahul Singh, Devanshu Mishra and Sabah Mohammed: “Civic technology is a fast-developing segment that holds huge potential for a new generation of startups. A recent survey report on civic technology noted that the sector saw $430 million in investment in just the last two years. It’s not just a new market ripe with opportunity it’s crucial to our democracy. Crowdsourcing has proven to be an effective supplementary mechanism for public engagement in city government in order to use mutual knowledge in online communities to address such issues as a means of engaging people in urban design. Government needs new alternatives — alternatives of modern, superior tools and services that are offered at reasonable rates.

An effective and easy-to-use civic technology platform enables wide participation. Response to, and a ‘conversation’ with, the users is very crucial for engagement, as is a feeling of being part of a society. These findings can contribute to the future design of civic technology platforms. In this research, we are trying to introduce a crowdsourcing platform, which will be helpful to people who are facing problems in their everyday practice because of the government services. This platform will gather the information from the trending twitter tweets for last month or so and try to identify which challenges public is confronting. Twitter for crowdsourcing as it is a simple social platform for questions and for the people who see the tweet to get an instant answer. These problems will be analyzed based on their significance which then will be made open to public for its solutions. The findings demonstrate how crowdsourcing tends to boost community engagement, enhances citizens ‘ views of their town and thus tends us find ways to enhance the city’s competitiveness, which faces some serious problems. Using of topic modeling with Latent Dirichlet Allocation (LDA) algorithm helped get categorized civic technology topics which was then validated by simple classification algorithm. While working on this research, we encountered some issues regarding to the tools that were available which we have discussed in the ‘Counter arguments’ section….(More)”.

Matt Apuzzo and David D. Kirkpatrick at The New York Times: “…Normal imperatives like academic credit have been set aside. Online repositories make studies available months ahead of journals. Researchers have identified and shared hundreds of viral genome sequences. More than 200 clinical trials have been launched, bringing together hospitals and laboratories around the globe.

“I never hear scientists — true scientists, good quality scientists — speak in terms of nationality,” said Dr. Francesco Perrone, who is leading a coronavirus clinical trial in Italy. “My nation, your nation. My language, your language. My geographic location, your geographic location. This is something that is really distant from true top-level scientists.”

On a recent morning, for example, scientists at the University of Pittsburgh discovered that a ferret exposed to Covid-19 particles had developed a high fever — a potential advance toward animal vaccine testing. Under ordinary circumstances, they would have started work on an academic journal article.

“But you know what? There is going to be plenty of time to get papers published,” said Paul Duprex, a virologist leading the university’s vaccine research. Within two hours, he said, he had shared the findings with scientists around the world on a World Health Organization conference call. “It is pretty cool, right? You cut the crap, for lack of a better word, and you get to be part of a global enterprise.”…

Several scientists said the closest comparison to this moment might be the height of the AIDS epidemic in the 1990s, when scientists and doctors locked arms to combat the disease. But today’s technology and the pace of information-sharing dwarfs what was possible three decades ago.

As a practical matter, medical scientists today have little choice but to study the coronavirus if they want to work at all. Most other laboratory research has been put on hold because of social distancing, lockdowns or work-from-home restrictions.

The pandemic is also eroding the secrecy that pervades academic medical research, said Dr. Ryan Carroll, a Harvard Medical professor who is involved in the coronavirus trial there. Big, exclusive research can lead to grants, promotions and tenure, so scientists often work in secret, suspiciously hoarding data from potential competitors, he said.

“The ability to work collaboratively, setting aside your personal academic progress, is occurring right now because it’s a matter of survival,” he said….(More)”.

“Data & Policy, an open-access journal exploring the potential of data science for governance and public decision-making, published its first cluster of peer-reviewed articles last week.

The articles include three contributions specifically concerned with data protection by design:

·       Gefion Theurmer and colleagues (University of Southampton) distinguish between data trusts and other data sharing mechanisms and discuss the need for workflows with data protection at their core;

·       Swee Leng Harris (King’s College London) explores Data Protection Impact Assessments as a framework for helping us know whether government use of data is legal, transparent and upholds human rights;

·       Giorgia Bincoletto’s (University of Bologna) study investigates data protection concerns arising from cross-border interoperability of Electronic Health Record systems in the European Union;

Also published, research by Jacqueline Lam and colleagues (University of Cambridge; Hong Kong University) on how fine-grained data from satellites and other sources can help us understand environmental inequality and socio-economic disparities in China, and this also reflects upon the importance of safeguarding data privacy and security. See also the blogs this week on the potential of Data Collaboratives for COVID-19 by Editor-in-Chief Stefaan Verhulst (the GovLab) and how COVID-19 exposes a widening data divide for the Global South, by Stefania Milan (University of Amsterdam) and Emiliano Treré (University of Cardiff).

Data & Policy is an open access, peer-reviewed venue for contributions that consider how systems of policy and data relate to one another. Read the 5 ways you can contribute to Data & Policy and contact dataandpolicy@cambridge.org with any questions….(More)”.

Adam Klein and Edward Felten at Politico: “Geolocation data—precise GPS coordinates or records of proximity to other devices, often collected by smartphone apps—is emerging as a critical tool for tracking potential spread. But other, more novel types of surveillance are already being contemplated for this first pandemic of the digital age. Body temperature readings from internet-connected thermometers are already being used at scale, but there are more exotic possibilities. Could smart-home devices be used to identify coughs of a timbre associated with Covid-19? Can facial recognition and remote temperature sensing be harnessed to identify likely carriers at a distance?

Weigh the benefits of each collection and use of data against the risks.

Each scenario will present a different level of privacy sensitivity, different collection mechanisms, different technical options affecting privacy, and varying potential value to health professionals, meaning there is no substitute for case-by-case judgment about whether the benefits of a particular use of data outweighs the risks.

The various ways to use location data, for example, present vastly different levels of concern for privacy. Aggregated location data, which combines many individualized location trails to show broader trends, is possible with few privacy risks, using methods that ensure no individual’s location trail is reconstructable from released data. For that reason, governments should not seek individualized location trails for any application where aggregated data would suffice—for example, analyzing travel trends to predict future epidemic hotspots.

If authorities need to trace the movements of identifiable people, their location trails should be obtained on the basis of an individualized showing. Gathering from companies the location trails for all users—as the Israeli government does, according to news reports—would raise far greater privacy concerns.

Establish clear rules for how data can be used, retained, and shared.

Once data is collected, the focus shifts to what the government can do with it. In counterterrorism programs, detailed rules seek to reduce the effect on individual privacy by limiting how different types of data can be used, stored, and shared.

The most basic safeguard is deleting data when it is no longer needed. Keeping data longer than needed unnecessarily exposes it to data breaches, leaks, and other potential privacy harms. Any individualized location tracking should cease, and the data should be deleted, once the individual no longer presents a danger to public health.

Poland’s new tracking app for those exposed to the coronavirus illustrates why reasonable limits are essential. The Polish government plans to retain location data collected by the app for six years. It is hard to see a public-health justification for keeping the data that long. But the story also illustrates well how a failure to consider users’ privacy can undermine a program’s efficacy: the app’s onerous terms led at least one Polish citizen to refuse to download it….(More)”.

Article by Cass Sunstein: “As part of the war on coronavirus, U.S. regulators are taking aggressive steps against “sludge” – paperwork burdens and bureaucratic obstacles. This new battle front is aimed at eliminating frictions, or administrative barriers, that have been badly hurting doctors, nurses, hospitals, patients, and beneficiaries of essential public and private programs. 

Increasingly used in behavioral science, the term sludge refers to everything from form-filling requirements to time spent waiting in line to rules mandating in-person interviews imposed by both private and public sectors. Sometimes those burdens are justified – as, for example, when the Social Security Administration takes steps to ensure that those who receive benefits actually qualify for them. But far too often, sludge is imposed with little thought about its potentially devastating impact.

The coronavirus pandemic is concentrating the bureaucratic mind – and leading to impressive and brisk reforms. Consider a few examples. 

Under the Supplemental Nutrition Assistance Program (formerly known as food stamps), would-be beneficiaries have had to complete interviews before they are approved for benefits. In late March, the Department of Agriculture waived that requirement – and now gives states “blanket approval” to give out benefits to people who are entitled to them.

Early last week, the Internal Revenue Service announced that in order to qualify for payments under the Families First Coronavirus Response Act, people would have to file tax returns – even if they are Social Security recipients who typically don’t do that. The sludge would have ensured that many people never got money to which they were legally entitled. Under public pressure, the Department of Treasury reversed course – and said that Social Security recipients would receive the money automatically.

Some of the most aggressive sludge reduction efforts have come from the Department of Health and Human Services. Paperwork, reporting and auditing requirements are being eliminated. Importantly, dozens of medical services can now be provided through “telehealth.” 

In the department’s own words, the government “is allowing telehealth to fulfill many face-to-face visit requirements for clinicians to see their patients in inpatient rehabilitation facilities, hospice and home health.” 

In addition, Medicare will now pay laboratory technicians to travel to people’s homes to collect specimens for testing – thus eliminating the need for people to travel to health-care facilities for tests (and risk exposure to themselves or others). There are many other examples….(More)”.

Britt Lake at FeedbackLabs: “When the Ebola crisis hit West Africa in 2015, one of the first responses was to build large field hospitals to treat the rapidly growing number of Ebola patients. As Paul Richards explains, “These were seen as the safest option. But they were shunned by families, because so few patients came out alive.” Aid workers vocally opposed local customs like burial rituals that contributed to the spread of the virus, which caused tension with communities. Ebola-affected communities insisted that some of their methods had proven effective in lowering case numbers before outside help arrived. When government and aid agencies came in and delivered their own messages, locals felt that their expertise had been ignored. Distrust spread, as did a sense that the response pitted local knowledge against global experts. And the virus continued to spread. 

The same is true now. Today there are more than 1 million confirmed cases of COVID-19 worldwide. The virus has spread to every country and territory in the world, leaving virtually no one unaffected. The pandemic is exacerbating inequities in employment, education, access to healthcare and food, and workers’ rights even as it raises new challenges. Everyone is looking for answers to address their needs and anxieties while also collectively realizing that this pandemic and our responses to it will irrevocably shape the future.

It would be easy for us in the public sector to turn inwards for solutions on how to respond effectively to the pandemic and its aftermath. It’s comfortable to focus on perspectives from our own teams when we feel a heightened sense of urgency, and decisions must be made on a dime. However, it would be a mistake not to consider input from the communities we serve – alongside expert knowledge – when determining how we support them through this crisis. 

COVID-19 affects everyone on earth, and it won’t be possible to craft equitable responses that meet people’s needs around the globe unless we listen to what would work best to address those challenges and support homegrown solutions that are already working. Effective communication of public health information, for instance, is central to controlling the spread of COVID-19. By listening to communities, we can better understand what communication methods work for them and can do a better job getting those messages across in a way that resonates with diverse communities. And to face the looming economic crisis that COVID-19 is precipitating, we will need to engage in real dialogue with people about their priorities and the way they want to see society rebuilt….(More)”.