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)”.

Governments could track COVID-19 lockdowns through social media posts

Curated on Posted on by Stefaan Verhulst

Alfred Ng at CNET: “Your posts on social media have been harvested for advertising. They’ve been taken to build up a massive facial recognition database. Now that same data could be used by companies and governments to help maintain quarantines during the coronavirus outbreak. 

Ghost Data, a research group in Italy and the US, collected more than half a million Instagram posts in March, targeting regions in Italy where residents were supposed to be on lockdown. It provided those images and videos to LogoGrab, an image recognition company that can automatically identify people and places. The company found at least 33,120 people violated Italy’s quarantine orders. 

Andrea Stroppa, the founder of Ghost Data, said his group has offered its research to the Italian government. Stroppa doesn’t consider the social media scraping to be a privacy concern because researchers anonymized the data by removing profile and specific location data before analyzing it. He also has public health on his mind. 

“In our view, privacy is very important. It’s a fundamental human right,” Stroppa said. “However, it’s important to give our support to help the government and the authorities. Hundreds of people are dying every day.”…(More)” .

Can location data from smartphones help slow the coronavirus? Facebook is giving academics a chance to try

Curated on Posted on by Stefaan Verhulst

Rebecca Robbins at Statnews: “It’s emerging as one of the more promising — and potentially controversial — ideas to slow the spread of the coronavirus: collecting smartphone data to track where people have gone and who they’ve crossed paths with.

The White House has discussed the notion, and several companies are reportedly in talks with the Trump administration to share aggregated user data. Researchers in the U.K. are working on one such app, and a team led by researchers at the Massachusetts Institute of Technology is building another, with an eye toward protecting user privacy. China and South Korea developed their own smartphone surveillance systems to try to clamp down on their own outbreaks, though their approaches likely wouldn’t be palatable in countries with greater expectations of privacy.

Then there’s Facebook, which collects data from its users around the world who opt in to sharing their location when using its smartphone app. Facebook does not share this information with governments. But in recent weeks, the social media giant has been sharing these data — in aggregated and anonymized form — with academic and nonprofit researchers analyzing the spread of the coronavirus.

Among the universities where Covid-19 researchers are harnessing Facebook’s data: the Harvard T.H. Chan School of Public Health, National Tsing Hua University in Taiwan, University of Pavia in Italy, and the London School of Hygiene and Tropical Medicine.

The idea is to study where people move and how often they encounter each other, in the hope of better understanding the virus’ spread — and which places are likely to soon see a spike in cases….(More)”.

The world after coronavirus

Curated on Posted on by Stefaan Verhulst

Yuval Noah Harari at the Financial Times: “Humankind is now facing a global crisis. Perhaps the biggest crisis of our generation. The decisions people and governments take in the next few weeks will probably shape the world for years to come. They will shape not just our healthcare systems but also our economy, politics and culture. We must act quickly and decisively. We should also take into account the long-term consequences of our actions.

When choosing between alternatives, we should ask ourselves not only how to overcome the immediate threat, but also what kind of world we will inhabit once the storm passes. Yes, the storm will pass, humankind will survive, most of us will still be alive — but we will inhabit a different world.  Many short-term emergency measures will become a fixture of life. That is the nature of emergencies. They fast-forward historical processes.

Decisions that in normal times could take years of deliberation are passed in a matter of hours. Immature and even dangerous technologies are pressed into service, because the risks of doing nothing are bigger. Entire countries serve as guinea-pigs in large-scale social experiments. What happens when everybody works from home and communicates only at a distance? What happens when entire schools and universities go online? In normal times, governments, businesses and educational boards would never agree to conduct such experiments. But these aren’t normal times. 

In this time of crisis, we face two particularly important choices. The first is between totalitarian surveillance and citizen empowerment. The second is between nationalist isolation and global solidarity. 

Under-the-skin surveillance

In order to stop the epidemic, entire populations need to comply with certain guidelines. There are two main ways of achieving this. One method is for the government to monitor people, and punish those who break the rules. Today, for the first time in human history, technology makes it possible to monitor everyone all the time. Fifty years ago, the KGB couldn’t follow 240m Soviet citizens 24 hours a day, nor could the KGB hope to effectively process all the information gathered. The KGB relied on human agents and analysts, and it just couldn’t place a human agent to follow every citizen. But now governments can rely on ubiquitous sensors and powerful algorithms instead of flesh-and-blood spooks. 

In their battle against the coronavirus epidemic several governments have already deployed the new surveillance tools. The most notable case is China. By closely monitoring people’s smartphones, making use of hundreds of millions of face-recognising cameras, and obliging people to check and report their body temperature and medical condition, the Chinese authorities can not only quickly identify suspected coronavirus carriers, but also track their movements and identify anyone they came into contact with. A range of mobile apps warn citizens about their proximity to infected patients…

If I could track my own medical condition 24 hours a day, I would learn not only whether I have become a health hazard to other people, but also which habits contribute to my health. And if I could access and analyse reliable statistics on the spread of coronavirus, I would be able to judge whether the government is telling me the truth and whether it is adopting the right policies to combat the epidemic. Whenever people talk about surveillance, remember that the same surveillance technology can usually be used not only by governments to monitor individuals — but also by individuals to monitor governments. 

The coronavirus epidemic is thus a major test of citizenship….(More)”.

Commission tells carriers to hand over mobile data in coronavirus fight

Curated on Posted on by Stefaan Verhulst

Mark Scott, Laurens Cerulus and Laura Kayali at Politico: “The European Commission on Monday urged Europe’s telecoms giants including Deutsche Telekom and Orange to share reams of people’s mobile data from across the region to help predict the spread of the coronavirus.

In a conference call with telecoms executives, Thierry Breton, Europe’s internal market commissioner, called on the companies to hand over anonymized and aggregated data from people’s mobile phones to track how the virus was spreading, according to three people with direct knowledge of the matter who spoke on the condition of anonymity because they were not authorized to speak publicly.

The draft plans would allow the Commission — and not the carriers — to manage how the data was used, and give EU officials control over so-called metadata on hundreds of millions of people’s mobile phones. That represents a significant step for Brussels as it would make the EU executive liable for any hefty fines if the digital information was hacked or misused.

Speaking to POLITICO, Breton confirmed the request to carriers, adding that the Commission needed such aggregated metadata to track the spread of the virus and determine where people’s need for medical supplies was the most pressing.

“We will select one big operator by country,” Breton said. “We want to be very fast and follow this on a daily basis.”

The Commission insisted the operation would respect the bloc’s privacy rules, known as the General Data Protection Regulation, and e-privacy legislation. The European Data Protection Supervisor would also be involved, the EU executive added. ..

In recent weeks, mobile operators have started to share anonymized data with EU governments in response to the spread of COVID-19. Carriers involved in the discussions with the Commission said Breton’s request would likely include providing the same type of data, and would have to respect the region’s tough privacy rules….

By aiming to pool large amounts of European mobile data, the Commission is following in the footsteps of national agencies, many of which are already working with carriers to track the spread of the virus through such anonymized digital information.

In Norway, local researchers saw a 60 percent decline in people traveling between cities after a countrywide lockdown was introduced — figures that were taken from people’s mobile phone data provided by Telenor, the national carrier.

Yet as the crisis has continued, countries such as Spain and Poland have gone a step further by creating smartphone apps, which offer an even greater ability to track and monitor people’s movements compared to anonymized mobile data. In the U.K., an app is in the works but has not yet launched….(More)”.

Data Reveals the True Impact of the Coronavirus Outbreak

Curated on Posted on by Stefaan Verhulst

Gian Volpicelli at Wired: “Something was wrong with Malaysia’s internet. It was March 13, and the more Simon Angus looked at the data, the more he suspected that the country might be in the midst of a coronavirus crisis.

Angus is an academic at Monash University and the cofounder of Kaspr Datahaus, a Melbourne-based company that analyses the quality of global internet connection to glean economic and social insights. The company monitors millions of internet-connected devices to gauge internet speed across the world. For them, a sudden deterioration in a country’s internet speed means that something is putting the network under strain. In recent weeks Kaspr’s theory is that the “something” is linked to the Covid-19 epidemics – as people who are working from home, or quarantining, or staying home as a precaution start using the internet more intensely than usual.

“For people who are in lockdown, or in panic mode, or in self-isolation, the internet has become a fundamentally important part of their information source, and of their consumption of entertainment,” Angus says.

To put it bluntly, when millions more turn on Netflix, scroll through TikTok, start a Zoom call, play Fortnite, or simply scroll idly through Twitter, that has repercussions on the quality of the country’s internet. (That is why EU commissioner Thierry Breton asked Netflix to restrict high-definition streaming until the emergency is over.)

Now, Angus’ scanning had detected that Malaysia’s internet had become over five percent slower in the March 12 to 13 timespan—worse even than in locked-down Italy. Officially, though, Malaysia had only 129 confirmed coronavirus cases—a relatively low number, although it had been inching up for a week.

What was happening, though, was that the population was cottoning on to the government’s sloppy handling of the pandemic. In late February, in what would turn out to be a monumental blunder, authorities had allowed a religious mass gathering to go ahead in Kuala Lumpur. Once Covid-19 cases linked to the event started to emerge, the government scrambled to find all the attendees, but got the numbers wrong—first saying that only 5,000 people at the gathering were Malaysia residents, then updating the figure to 10,000 and then 14,500. With the mess laid bare, many Malaysians seemed to have decided to stay at home out of sheer self-preservation…(More)”.

Now Is the Time for Open Access Policies—Here’s Why

Curated on Posted on by Stefaan Verhulst


Victoria Heath and Brigitte Vézina at Creative Commons: “Over the weekend, news emerged that upset even the most ardent skeptics of open access. Under the headline, “Trump vs Berlin” the German newspaper Welt am Sonntag reported that President Trump offered $1 billion USD to the German biopharmaceutical company CureVac to secure their COVID-19 vaccine “only for the United States.”

In response, Jens Spahn, the German health minister said such a deal was completely “off the table” and Peter Altmaier, the German economic minister replied, “Germany is not for sale.” Open science advocates were especially infuriated. Professor Lorraine Leeson of Trinity College Dublin, for example, tweeted, “This is NOT the time for this kind of behavior—it flies in the face of the #OpenScience work that is helping us respond meaningfully right now. This is the time for solidarity, not exclusivity.” The White House and CureVac have since denied the report. 

Today, we find ourselves at a pivotal moment in history—we must cooperate effectively to respond to an unprecedented global health emergency. The mantra, “when we share, everyone wins” applies now more than ever. With this in mind, we felt it imperative to underscore the importance of open access, specifically open science, in times of crisis.

Why open access matters, especially during a global health emergency 

One of the most important components of maintaining global health, specifically in the face of urgent threats, is the creation and dissemination of reliable, up-to-date scientific information to the public, government officials, humanitarian and health workers, as well as scientists.

Several scientific research funders like the Gates Foundation, the Hewlett Foundation, and the Wellcome Trust have long-standing open access policies and some have now called for increased efforts to share COVID-19 related research rapidly and openly to curb the outbreak. By licensing material under a CC BY-NC-SA license, the World Health Organization (WHO) is adopting a more conservative approach to open access that falls short of what the scientific community urgently needs in order to access and build upon critical information….(More)”.