Covid-19 Changed How the World Does Science, Together

Curated on Posted on by Stefaan Verhulst

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)”.

The 9/11 Playbook for Protecting Privacy

Curated on Posted on by Stefaan Verhulst

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)”.

The War on Coronavirus Is Also a War on Paperwork

Curated on Posted on by Stefaan Verhulst

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)”.

Experts warn of privacy risk as US uses GPS to fight coronavirus spread

Curated on Posted on by Stefaan Verhulst

Alex Hern at The Guardian: “A transatlantic divide on how to use location data to fight coronavirus risks highlights the lack of safeguards for Americans’ personal data, academics and data scientists have warned.

The US Centers for Disease Control and Prevention (CDC) has turned to data provided by the mobile advertising industry to analyse population movements in the midst of the pandemic.

Owing to a lack of systematic privacy protections in the US, data collected by advertising companies is often extremely detailed: companies with access to GPS location data, such as weather apps or some e-commerce sites, have been known to sell that data on for ad targeting purposes. That data provides much more granular information on the location and movement of individuals than the mobile network data received by the UK government from carriers including O2 and BT.

While both datasets track individuals at the collection level, GPS data is accurate to within five metres, according to Yves-Alexandre de Montjoye, a data scientist at Imperial College, while mobile network data is accurate to 0.1km² in city centres and much less in less dense areas – the difference between locating an individual to their street and to a specific room in their home…

But, warns de Montjoye, such data is never truly anonymous. “The original data is pseudonymised, yet it is quite easy to reidentify someone. Knowing where someone was is enough to reidentify them 95% of the time, using mobile phone data. So there’s the privacy concern: you need to process the pseudonymised data, but the pseudonymised data can be reidentified. Most of the time, if done properly, the aggregates are aggregated, and cannot be de-anonymised.”

The data scientist points to successful attempts to use location data in tracking outbreaks of malaria in Kenya or dengue in Pakistan as proof that location data has use in these situations, but warns that trust will be hurt if data collected for modelling purposes is then “surreptitiously used to crack down on individuals not respecting quarantines or kept and used for unrelated purposes”….(More)”.

Why isn’t the government publishing more data about coronavirus deaths?

Curated on Posted on by Stefaan Verhulst

Article by Jeni Tennison: “Studying the past is futile in an unprecedented crisis. Science is the answer – and open-source information is paramount…Data is a necessary ingredient in day-to-day decision-making – but in this rapidly evolving situation, it’s especially vital. Everything has changed, almost overnight. Demands for food, transport, and energy have been overhauled as more people stop travelling and work from home. Jobs have been lost in some sectors, and workers are desperately needed in others. Historic experience can no longer tell us how our society or economy is working. Past models hold little predictive power in an unprecedented situation. To know what is happening right now, we need up-to-date information….

This data is also crucial for scientists, who can use it to replicate and build upon each other’s work. Yet no open data has been published alongside the evidence for the UK government’s coronavirus response. While a model that informed the US government’s response is freely available as a Google spreadsheet, the Imperial College London model that prompted the current lockdown has still not been published as open-source code. Making data open – publishing it on the web, in spreadsheets, without restrictions on access – is the best way to ensure it can be used by the people who need it most.

There is currently no open data available on UK hospitalisation rates; no regional, age or gender breakdown of daily deaths. The more granular breakdown of registered deaths provided by the Office of National Statistics is only published on a weekly basis, and with a delay. It is hard to tell whether this data does not exist or the NHS has prioritised creating dashboards for government decision makers rather than informing the rest of the country. But the UK is making progress with regard to data: potential Covid-19 cases identified through online and call-centre triage are now being published daily by NHS Digital.

Of course, not all data should be open. Singapore has been publishing detailed data about every infected person, including their age, gender, workplace, where they have visited and whether they had contact with other infected people. This can both harm the people who are documented and incentivise others to lie to authorities, undermining the quality of data.

When people are concerned about how data about them is handled, they demand transparency. To retain our trust, governments need to be open about how data is collected and used, how it’s being shared, with whom, and for what purpose. Openness about the use of personal data to help tackle the Covid-19 crisis will become more pressing as governments seek to develop contact tracing apps and immunity passports….(More)”.

The Fate of the News in the Age of the Coronavirus

Curated on Posted on by Stefaan Verhulst

Michael Luo at the New Yorker: “The shift to paywalls has been a boon for quality journalism. Instead of chasing trends on search engines and social media, subscription-based publications can focus on producing journalism worth paying for, which has meant investments in original reporting of all kinds. A small club of élite publications has now found a sustainable way to support its journalism, through readers instead of advertisers. The Times and the Post, in particular, have thrived in the Trump era. So have subscription-driven startups, such as The Information, which covers the tech industry and charges three hundred and ninety-nine dollars a year. Meanwhile, many of the free-to-read outlets still dependent on ad revenue—including former darlings of the digital-media revolution, such as BuzzFeed, Vice, HuffPost, Mic, Mashable, and the titles under Vox Media—have labored to find viable business models.

Many of these companies attracted hundreds of millions of dollars in venture funding, and built sizable newsrooms. Even so, they’ve struggled to succeed as businesses, in part because Google and Facebook take in the bulk of the revenue derived from digital advertising. Some sites have been forced to shutter; others have slashed their staffs and scaled back their journalistic ambitions. There are free digital news sites that continue to attract outsized audiences: CNN and Fox News, for instance, each draw well over a hundred million visitors a month. But the news on these sites tends to be commodified. Velocity is the priority, not complexity and depth.

A robust, independent press is widely understood to be an essential part of a functioning democracy. It helps keep citizens informed; it also serves as a bulwark against the rumors, half-truths, and propaganda that are rife on digital platforms. It’s a problem, therefore, when the majority of the highest-quality journalism is behind a paywall. In recent weeks, recognizing the value of timely, fact-based news during a pandemic, the Times, The Atlantic, the Wall Street Journal, the Washington Post, and other publications—including The New Yorker—have lowered their paywalls for portions of their coronavirus coverage. But it’s unclear how long publishers will stay committed to keeping their paywalls down, as the state of emergency stretches on. The coronavirus crisis promises to engulf every aspect of society, leading to widespread economic dislocations and social disruptions that will test our political processes and institutions in ways far beyond the immediate public-health threat. With the misinformation emanating from the Trump White House, the need for reliable, widely-accessible information and facts is more urgent than ever. Yet the economic shutdown created by the spread of covid-19 promises to decimate advertising revenue, which could doom more digital news outlets and local newspapers.

It’s easy to underestimate the information imbalance in American society. After all, “information” has never felt more easily available. A few keyboard strokes on an Internet search engine instantly connects us to unlimited digital content. On Facebook, Instagram, and other social-media platforms, people who might not be intentionally looking for news encounter it, anyway. And yet the apparent ubiquity of news and information is misleading. Between 2004 and 2018, nearly one in five American newspapers closed; in that time, print newsrooms have shed nearly half of their employees. Digital-native publishers employ just a fraction of the diminished number of journalists who still remain at legacy outlets, and employment in broadcast-TV newsrooms trails that of newspapers. On some level, news is a product manufactured by journalists. Fewer journalists means less news. The tributaries that feed the river of information have been drying up. There are a few mountain springs of quality journalism; most sit behind a paywall.

A report released last year by the Reuters Institute for the Study of Journalism maps the divide that is emerging among news readers. The proportion of people in the United States who pay for online news remains small: just sixteen per cent. Those readers tend to be wealthier, and are more likely to have college degrees; they are also significantly more likely to find news trustworthy. Disparities in the level of trust that people have in their news diets, the data suggests, are likely driven by the quality of the news they are consuming….(More)”.

Doctors Turn to Social Media to Develop Covid-19 Treatments in Real Time

Curated on Posted on by Stefaan Verhulst

Michael Smith and Michelle Fay Cortez at Bloomberg: “There is a classic process for treating respiratory problems: First, give the patient an oxygen mask, or slide a small tube into the nose to provide an extra jolt of oxygen. If that’s not enough, use a “Bi-Pap” machine, which pushes air into the lungs more forcefully. If that fails, move to a ventilator, which takes over the patient’s breathing.

But these procedures tend to fail With Covid-19 patients. Physicians found that by the time they reached that last step, it was often too late; the patient was already dying.

In past pandemics like the 2003 global SARS outbreak, doctors sought answers to such mysteries from colleagues in hospital lounges or maybe penned articles for medical journals. It could take weeks or months for news of a breakthrough to reach the broader community.

For Covid-19, a kind of medical hive mind is on the case. By the tens of thousands, doctors are joining specialized social media groups to develop answers in real time. One of them, a Facebook group called the PMG COVID19 Subgroup, has 30,000 members worldwide….

Doctors are trying to fill an information void online. Sabry, an emergency-room doctor in two hospitals outside Los Angeles, found that the 70,000-strong, Physician Moms Group she started five years ago on Facebook was so overwhelmed by coronavirus threads that she created the Covid-19 offshoot. So many doctors tried to join the new subgroup that Facebook’s click-to-join code broke. Some 10,000 doctors waited in line as the social media company’s engineers devised a fix.

She’s not alone. The topic also consumed two Facebook groups started by Dr. Nisha Mehta, a 38-year-old radiologist from Charlotte, North Carolina. The 54,000-member Physician Side Gigs, intended for business discussions, and an 11,000-person group called Physician Community for more general topics, are also all coronavirus, all the time, with thousands waiting to join…(More)”.

COVID-19 is creating a democratic deficit – here’s how to reduce it

Curated on Posted on by Stefaan Verhulst

Article by Matt Ryan: “As parliaments around the country move to scale down operations and defer sittings as part of containing COVID-19 people are beginning to ring the accountability alarm bells….

The good news is that we can learn from those parliaments and politicians around the world who have already been trialling new ways of working that go beyond traditional sittings. Leveraging simple and widely available technologies, they are involving more people with more diverse backgrounds in their processes with less reliance on those people being physically present.

Select Committees in the UK Parliament, for example, have used online “evidence checks” to scrutinise the basis for policy. These one-month exercises use targeted outreach and social media strategies to invite comments from knowledgeable stakeholders and members of the public about the rigour of evidence on which a government department’s policy is based. Evidence for departmental policy is summarised in a two-page document and comments publicly displayed in a web forum that resembles a readers’ comments section in an online news article.

In Taiwan, a participatory governance process pioneered by civic rights activists at the behest of a government minister combines large-scale online participation with smaller in-person gatherings to build a “rough consensus” on legislative proposals related to the digital economy before they are introduced. Known as vTaiwan, the process has led to 26 pieces of national legislation dealing with issues such as Uber, telemedicine and online alcohol sales, and has involved 200,000 people.

The government of Mexico City has raised the stakes even higher, involving more than 400,000 people in a process to draft a new constitution. It included a novel partnership between Change.org and the city mayor that enabled residents to create petition-backed proposals which, once they reached a certain threshold of support, bound the mayor to include them in the draft he submitted to a special constitutional assembly.

Processes like these can also offer relief for politicians and parliamentary officials managing the strain of examining an ever-increasing number of issues of greater complexity with limited personnel and budget. Evidence checks provide access to a wider pool of experts who can bolster existing research capacity. vTaiwan helps to find workable ways forward in industries being rapidly transformed by digital technologies. By “crowdsourcing” the city’s constitution, Mexico City’s mayor retained the trust of residents while undertaking reform at a grand scale….(More)”.

Why we need responsible data for children

Curated on Posted on by Stefaan Verhulst

Andrew Young and Stefaan Verhulst at The Conversation: “…Without question, the increased use of data poses unique risks for and responsibilities to children. While practitioners may have well-intended purposes to leverage data for and about children, the data systems used are often designed with (consenting) adults in mind without a focus on the unique needs and vulnerabilities of children. This can lead to the collection of inaccurate and unreliable data as well as the inappropriate and potentially harmful use of data for and about children….

Research undertaken in the context of the RD4C initiative uncovered the following trends and realities. These issues make clear why we need a dedicated data responsibility approach for children.

  • Today’s children are the first generation growing up at a time of rapid datafication where almost all aspects of their lives, both on and off-line, are turned into data points. An entire generation of young people is being datafied – often starting even before birth. Every year the average child will have more data collected about them in their lifetime than would a similar child born any year prior. The potential uses of such large volumes of data and the impact on children’s lives are unpredictable, and could potentially be used against them.
  • Children typically do not have full agency to make decisions about their participation in programs or services which may generate and record personal data. Children may also lack the understanding to assess a decision’s purported risks and benefits. Privacy terms and conditions are often barely understood by educated adults, let alone children. As a result, there is a higher duty of care for children’s data.
  • Disaggregating data according to socio-demographic characteristics can improve service delivery and assist with policy development. However, it also creates risks for group privacy. Children can be identified, exposing them to possible harms. Disaggregated data for groups such as child-headed households and children experiencing gender-based violence can put vulnerable communities and children at risk. Data about children’s location itself can be risky, especially if they have some additional vulnerability that could expose them to harm.
  • Mishandling data can cause children to lose trust in institutions that deliver essential services including vaccines, medicine, and nutrition supplies. For organizations dealing with child well-being, these retreats can have severe consequences. Distrust can cause families and children to refuse health, education, child protection and other public services. Such privacy protective behavior can impact children throughout the course of their lifetime, and potentially exacerbate existing inequities and vulnerabilities.
  • As volumes of collected and stored data increase, obligations and protections traditionally put in place for children may be difficult or impossible to uphold. The interests of children are not always prioritized when organizations define their legitimate interest to access or share personal information of children. The immediate benefit of a service provided does not always justify the risk or harm that might be caused by it in the future. Data analysis may be undertaken by people who do not have expertise in the area of child rights, as opposed to traditional research where practitioners are specifically educated in child subject research. Similarly, service providers collecting children’s data are not always specially trained to handle it, as international standards recommend.
  • Recent events around the world reveal the promise and pitfalls of algorithmic decision-making. While it can expedite certain processes, algorithms and their inferences can possess biases that can have adverse effects on people, for example those seeking medical care and attempting to secure jobs. The danger posed by algorithmic bias is especially pronounced for children and other vulnerable populations. These groups often lack the awareness or resources necessary to respond to instances of bias or to rectify any misconceptions or inaccuracies in their data.
  • Many of the children served by child welfare organizations have suffered trauma. Whether physical, social, emotional in nature, repeatedly making children register for services or provide confidential personal information can amount to revictimization – re-exposing them to traumas or instigating unwarranted feelings of shame and guilt.

These trends and realities make clear the need for new approaches for maximizing the value of data to improve children’s lives, while mitigating the risks posed by our increasingly datafied society….(More)”.

How Civic Technology Can Help Stop a Pandemic

Curated on Posted on by Stefaan Verhulst

Jaron Lanier and E. Glen Weyl at Foreign Affairs: “The spread of the novel coronavirus and the resulting COVID-19 pandemic have provided a powerful test of social and governance systems. Neither of the world’s two leading powers, China and the United States, has been particularly distinguished in responding. In China, an initial bout of political denial allowed the virus to spread for weeks, first domestically and then globally, before a set of forceful measures proved reasonably effective. (The Chinese government also should have been better prepared, given that viruses have jumped from animal hosts to humans within its territory on multiple occasions in the past.) The United States underwent its own bout of political denial before adopting social-distancing policies; even now, its lack of investment in public health leaves it ill-equipped for this sort of emergency.

The response of the bureaucratic and often technophobic European Union may prove even worse: Italy, although far from the epicenter of the outbreak, has four times the per capita rate of cases as China does, and even famously orderly Germany is already at half China’s rate. Nations in other parts of the world, such as information-manipulating Iran, provide worse examples yet.

Focusing on the countries that have done worst, however, may be less useful at this point than considering which country has so far done best: Taiwan. Despite being treated by the World Health Organization as part of China, and despite having done far broader testing than the United States (meaning the true rate of infection is far less hidden), Taiwan has only one-fifth the rate of known cases in the United States and less than one-tenth the rate in widely praised Singapore. Infections could yet spike again, especially with the global spread making visitors from around the world vectors of the virus. Yet the story of Taiwan’s initial success is worth sharing not just because of its lessons for containing the present pandemic but also because of its broader lessons about navigating pressing challenges around technology and democracy.

Taiwan’s success has rested on a fusion of technology, activism, and civic participation. A small but technologically cutting-edge democracy, living in the shadow of the superpower across the strait, Taiwan has in recent years developed one of the world’s most vibrant political cultures by making technology work to democracy’s advantage rather than detriment. This culture of civic technology has proved to be the country’s strongest immune response to the new coronavirus….(More)”.