Coronavirus shows how badly we need consensus on collective data rights and needs

Curated on Posted on by Stefaan Verhulst

Blogpost by Ania Calderon: “The rapid spread of this disease is exposing fault lines in our political and social balance — most visibly in the lack of protection for the poorest or investment in healthcare systems. It’s also forcing us to think about how we can work across jurisdictions and political contexts to foster better collaboration, build trust in institutions, and save lives.

As we said recently in a call for Open COVID-19 Data, governments need data from other countries to model and flatten the curve, but there is little consistency in how they gather it. Meanwhile, the consequences of different approaches show the balance required in effectively implementing open data policies. For example, Singapore has published detailed personal data about every coronavirus patient, including where they work and live and whether they had contact with others. This helped the city-state keep its infection and death rates extremely low in the early stages of the epidemic, but also led to proportionality concerns as people might be targeted and harmed.

Overall, few governments are publishing the information on which they are basing these huge decisions. This makes it hard to collaborate, scrutinise, and build trust. For example, the models can only be as good as the data that feed them, and we need to understand their limitations. Opening up the data and the source code behind them would give citizens confidence that officials were making decisions in the public’s interest rather than their political ones. It would also foster the international joined-up action needed to meet this challenge. And it would allow non-state actors into the process to plug gaps and deliver and scale effective solutions quickly.

At the same time, legitimate concerns have been raised about how this data is used, both now and in the future.

As we say in our strategy, openness needs to be balanced with both individual and collective data rights, and policies need to account for context.

People may be ok to give up some of their privacy — like having their movements tracked by government smartphone apps — if that can help combat a global health crisis, but that would seem an unthinkable invasion of privacy to many in less exceptional times. We rightly worry how this data might be used later on, and by whom. Which shows that data systems need to be able to respond to changing times, while holding fundamental human rights and civil liberties in check.

As with so many things, this crisis is forcing the world to question orthodoxies around individual and collective data rights and needs. It shines a light on policies and approaches which might help avoid future disasters and build a fairer, healthier, more collaborative society overall….(More)”.

Lack of design input in healthcare is putting both patients and doctors at risk, says physician

Curated on Posted on by Stefaan Verhulst

Marcus Fairs at DeZeen: “Hospitals “desperately need designers” to improve everything from the way they tackle coronavirus to the layout of operating theatres and the design of medical charts, according to a senior US doctor.

“We desperately need designers to help organize the environment and products to help keep the correct focus on a patient, and reduce distraction,” said Dr Sam Smith, a clinical physician at Massachusetts General Hospital in Boston.

“We need designers at every turn, but they are so infrequently consulted,” he added. “In the end, most physicians burn out early because, in part, we are lacking well designed cognitive and physical spaces to help process the information smoothly.”…

“Visual hierarchy is a huge problem in medicine,” Smith said, giving an example. “This is very evident in online medical charts. Very poor visual hierarchy exists because designers were not consulted in the platform or details of the patient information organization or presentation.”

“This inability to incorporate good visual hierarchy, for example organizing a complex medical history in a visual way to emphasize what really needs attention for the patient, has led to ineffective care, and even patient harm on occasions over the years,” he explained.

“I have seen it in my 20 years of practice time and time again. Doctors are humans too, and the demands on them processing huge amounts of information are high.”…(More)”.

Covid-19: the rise of a global collective intelligence?

Curated on Posted on by Stefaan Verhulst

Marc Santolini at the Conversation: “All around the world, scientists and practitioners are relentlessly harnessing data on the pandemic to model its progression, predict the impact of possible interventions and develop solutions to medical equipment shortages, generating open-source data and codes to be reused by others.

Research and innovation is now in a collaborative frenzy just as contagious as the coronavirus. Is this the rise of the famous “collective intelligence” supposed to solve our major global problems?

The rise of a global collective intelligence

The beginning of the epidemic saw “traditional” research considerably accelerate and open its means of production, with journals such as Science, Nature and The Lancet immediately granting public access to publications on the coronavirus and Covid-19.

The academic world is in ebullition. Every day, John Hopkins University updates an open and collaborative stream of data on the epidemic, which have already been reused more than 11,000 times. Research results are published immediately on pre-print servers or laboratory websites. Algorithms and interactive visualizations are flourishing on GitHub; outreach videos on YouTube. The figures are staggering, with nearly 9,000 academic articles published on the subject to date.

More recently, popular initiatives bringing together a variety of actors have emerged outside institutional frameworks, using online platforms. For example, a community of biologists, engineers and developers has emerged on the Just One Giant Lab (JOGL) collaborative platform to develop low-cost, open-source solutions against the virus. This platform, which we developed with Leo Blondel (Harvard University) and Thomas Landrain (La Paillasse, PILI) over the past three years, is designed as a virtual, open and distributed research institute aimed at developing solutions to the Sustainable Development Goals (SDGs) defined by the United Nations. Communities use it to self-organize and provide innovative solutions to urgent problems requiring fundamentally interdisciplinary skills and knowledge. The platform facilitates coordination by linking needs and resources within the community, animating research programs, and organising challenges….(More)”.

COVID-19 Highlights Need for Public Intelligence

Curated on Posted on by Stefaan Verhulst

Blog by Steven Aftergood: “Hobbled by secrecy and timidity, the U.S. intelligence community has been conspicuously absent from efforts to combat the COVID-19 pandemic, the most serious national and global security challenge of our time.

The silence of intelligence today represents a departure from the straightforward approach of then-Director of National Intelligence Dan Coats who offered the clearest public warning of the risk of a pandemic at the annual threat hearing of the Senate Intelligence Committee in January 2019:

“We assess that the United States and the world will remain vulnerable to the next flu pandemic or large-scale outbreak of a contagious disease that could lead to massive rates of death and disability, severely affect the world economy, strain international resources, and increase calls on the United States for support,” DNI Coats testified.

But this year, for the first time in recent memory, the annual threat hearing was canceled, reportedly to avoid conflict between intelligence testimony and White House messaging. Though that seems humiliating to everyone involved, no satisfactory alternative explanation has been provided. The 2020 worldwide threat statement remains classified, according to an ODNI denial of a Freedom of Information Act request for a copy. And intelligence agencies have been reduced to recirculating reminders from the Centers for Disease Control to wash your hands and practice social distancing.

The US intelligence community evidently has nothing useful to say to the nation about the origins of the COVID-19 pandemic, its current spread or anticipated development, its likely impact on other security challenges, its effect on regional conflicts, or its long-term implications for global health.

These are all topics perfectly suited to open source intelligence collection and analysis. But the intelligence community disabled its open source portal last year. And the general public was barred even from that.

It didn’t — and doesn’t — have to be that way.

In 1993, the Federation of American Scientists created an international email network called ProMED — Program for Monitoring Emerging Diseases — which was intended to help discover and provide early warning about new infectious diseases.

Run on a shoestring budget and led by Stephen S. Morse, Barbara Hatch Rosenberg, Jack Woodall and Dorothy Preslar, ProMED was based on the notion that “public intelligence” is not an oxymoron. That is to say, physicians, scientists, researchers, and other members of the public — not just governments — have the need for current threat assessments that can be readily shared, consumed and analyzed. The initiative quickly proved its worth….(More)”.

Transformative placemaking amid COVID-19: Early stories from the field

Curated on Posted on by Stefaan Verhulst

Hanna Love at Brookings: “As COVID-19 leaves no place immune – threatening to destabilize urban communities, as well as rural and suburban areas with limited resources and infrastructure to weather the outbreak— the connectivity of people and places matters more than ever. Local responses to the pandemic are revealing that even amid unprecedented distancing, the economic, physical, social, and civic structures of connected communities are laying the groundwork for resilience and recovery.

In this moment of uncertainty, communities are increasingly seeking solutions from the community-based organizations, networks, and coalitions they know and trust in ordinary times. We at the Bass Center for Transformative Placemaking decided to look to there too, revisiting past entries from our Placemaking Postcards series to uncover how these organizations are responding to the COVID-19 crisis….

Across the country, hyperlocal governance organizations are being called upon to play an expanded role in supporting small businesses. This rang true for each organization we spoke with, as place governance entities in urban and rural areas alike modified their work to include compiling COVID-19 resources for small businesses, redirecting existing funding streams, creating new resources for relief, and offering promotions for customers to purchase local goods and services. Some are even stepping in to manufacture health materials for first responders.

For instance, Philadelphia’s University City District—which we highlighted last year for their efforts to measure inclusion in public spaces—is partnering with the University of Pennsylvania to launch a relief fund for local, independently owned retailers and restaurants. Simultaneously, they are working to bring revenue to local businesses through a matching gift cards program, and are sponsoring local restaurants to prepare meals for families with ill children at the Ronald McDonald House.

Rural place-based organizations are engaging in similar efforts. Appalshop, a Kentucky nonprofit we covered last month for their solar energy project, has raised more than $10,000 for local businesses, nonprofits, and first responders. The community development organization Downtown Wytheville in Virginia (whose rural entrepreneurship competition we wrote about this summer), is helping businesses apply for SBA disaster relief funding and running a “Support Local Safely” campaign to publicize open businesses. In Wyoming, Rawlins DDA/Main Street (whose entrepreneurship center we wrote about last fall), is engaging the public about business needs and offering similar promotions. While seemingly small in scale, all of these efforts are critical supports needed to keep businesses open and will lay the groundwork for recovery in the months to come.

Other place-based organizations are adapting their business models to respond to the crisis. In ordinary times, makerspaces and other innovation spaces provide places to collaborate, support entrepreneurship, and challenge economic and social divides. In the midst of COVID-19, makerspaces are abandoning those routines to support frontline responders. Open Works—a Baltimore makerspace we covered for their efforts to build trust between residents, businesses, and institutions—has partnered with Innovation Works and We the Builders to launch a collaborative emergency response effort to manufacture face shields for health care workers….(More)”.

Faced with a pandemic, good public health requires stronger democracy

Curated on Posted on by Stefaan Verhulst

Article by Matt Leighninger: “Dealing with Covid-19 requires a massive, coordinated, democratic response. Governments, non-profit organizations, businesses, grassroots groups, and individual citizens all have significant parts to play.

In that sense, our ability to withstand the coronavirus is based in large part on the strength of our democracy. I don’t mean voting, political parties, and the other electoral features we associate with democracy: I mean the extent to which our political system helps people to act collectively, support each other, share information, and collaborate with experts and public officials. Strong democracies are good at these things.

Unfortunately, our democracy isn’t very strong right now. Trust between citizens and government officials is at an all-time low, most people don’t feel like they have a meaningful say in public decisions, and in many cases, we can’t even agree on how to separate fact from fiction. Volunteerism is strong — especially now, as people react to the crisis — but volunteers generally don’t feel that their service is valued or supported by our political system…

Strengthening democracy, at all the levels of government, can help us achieve the kind of trust we need to deal with Covid-19 — so that people trust in the information they get from doctors and medical authorities like the Centers for Disease Control, so that doctors and public health officials trust that citizens will wash their hands and avoid contact with each other, so that people in different parts of the country will trust that we’re all in this together.

The new Community Voices for Health initiative, supported by the Robert Wood Johnson Foundation and assisted by Public Agenda and Altarum, will provide new examples of what stronger democracy can look like. Over the next two years, teams in six states will engage thousands of people in decision-making, problem-solving, and community-building. From the work of community health workers in Georgia… to health plans developed by county and tribal councils in New Mexico… to online survey panels on policy questions in Pennsylvania and Colorado… to youth leadership in Nevada… to public participation laws in Indiana, this initiative will explore new ways of engaging residents for better health.

The next wave of technological innovations also provides many opportunities for strengthening democracy. For example, there are interesting new tools for informing voters (like VoteCompass), bridging different viewpoints (like the vTaiwan process), and gathering input from large numbers of people (like BeHeard Philly)….

In the face of a possible flu pandemic 15 years ago, the Centers for Disease Control took a closer look at how engagement could be influential in counteracting these threats. Summing up that experience, CDC epidemiologist Roger Bernier concluded that “Democracy is good for your health.” We should take that statement as more than just a platitude — we should explore the concrete ways of making our democracy stronger….(More)”

Mind the app – considerations on the ethical risks of COVID-19 apps

Curated on Posted on by Stefaan Verhulst

Blog by Luciano Floridi: “There is a lot of talk about apps to deal with the pandemic. Some of the best solutions use the Bluetooth connection of mobile phones to determine the contact between people and therefore the probability of contagion.

In theory, it’s simple. In practice, it is a minefield of ethical problems, not only technical ones. To understand them, it is useful to distinguish between the validation and the verification of a system. 
The validation of a system answers the question: “are we building the right system?”. The answer is no if the app

  • is illegal;
  • is unnecessary, for example, there are better solutions; 
  • is a disproportionate solution to the problem, for example, there are only a few cases in the country; 
  • goes beyond the purpose for which it was designed, for example, it is used to discriminate people; 
  • continues to be used even after the end of the emergency.

Assuming the app passes the validation stage, then it needs to be verified.
The verification of a system answers the question: “are we building the system in the right way?”. Here too the difficulties are considerable. I have become increasingly aware of them as I collaborate with two national projects about a coronavirus app, as an advisor on their ethical implications. 
For once, the difficult problem is not privacy. Of course, it is trivially true that there are and there might always be privacy issues. The point is that, in this case, they can be made much less pressing than other issues. However, once (or if you prefer, even if) privacy is taken care of, other difficulties appear to remain intractable. A Bluetooth-based app can use anonymous data, recorded only in the mobile phone, used exclusively to send alerts in case of the contact with people infected. It is not easy but it is feasible, as demonstrated by the approach adopted by the Pan-European Privacy Preserving Proximity Tracing initiative (PEPP-PT). The apparently intractable problems are the effectiveness and fairness of the app.

To be effective, an app must be adopted by many people. In Britain, I was told that it would be useless if used by less than 20% of the population. According to the PEPP-PT, real effectiveness seems to be reached around the threshold of 60% of the whole population. This means that in Italy, for example, the app should be consistently and correctly used by something between 11m to 33m people, out of a population of 55m. Consider that in 2019 Facebook Messenger was used by 23m Italians. Even the often-mentioned app TraceTogether has been downloaded by an insufficient number of people in Singapore.


Given that it is unlikely that the app will be adopted so extensively just voluntarily, out of social responsibility, and that governments are reluctant to impose it as mandatory (and rightly so, for it would be unfair, see below), it is clear that it will be necessary to encourage its use, but this only shifts the problem….

Therefore, one should avoid the risk of transforming the production of the app into a signalling process. To do so, the verification should not be severed from, but must feedback on, the validation. This means that if the verification fails so should the validation, and the whole project ought to be reconsidered. It follows that a clear deadline by when (and by whom) the whole project may be assessed (validation + verification) and in case be terminated, or improved, or even simply renewed as it is, is essential. At least this level of transparency and accountability should be in place.

An app will not save us. And the wrong app will be worse than useless, as it will cause ethical problems and potentially exacerbate health-related risks, e.g. by generating a false sense of security, or deepening the digital divide. A good app must be part of a wider strategy, and it needs to be designed to support a fair future. If this is not possible, better do something else, avoid its positive, negative and opportunity costs, and not play the political game of merely signalling that something (indeed anything) has been tried…(More)”.

Mapping how data can help address COVID-19

Curated on Posted on by Stefaan Verhulst

Blog by Andrew J. Zahuranec and Stefaan G. Verhulst: “The novel coronavirus disease (COVID-19) is a global health crisis the likes of which the modern world has never seen. Amid calls to action from the United Nations Secretary-General, the World Health Organization, and many national governments, there has been a proliferation of initiatives using data to address some facet of the pandemic. In March, The GovLab at NYU put out its own call to action, which identifies key steps organizations and decision-makers can take to build the data infrastructure needed to tackle pandemics. This call has been signed by over 400 data leaders from around the world in the public and private sector and in civil society.

But questions remain as to how many of these initiatives are useful for decision-makers. While The GovLab’s living repository contains over 160 data collaboratives, data competitions, and other innovative work, many of these examples take a data supply-side approach to the COVID-19 response. Given the urgency of the situation, some organizations create projects that align with the available data instead of trying to understand what insights those responding to the crisis actually want, including issues that may not be directly related to public health.

We need to identify and ask better questions to use data effectively in the current crisis. Part of that work means understanding what topics can be addressed through enhanced data access and analysis.

Using The GovLab’s rapid-research methodology, we’ve compiled a list of 12 topic areas related to COVID-19 where data and analysis is needed. …(More)”.

How can digital tools support deliberation?

Curated on Posted on by Stefaan Verhulst

 Claudia Chwalisz at the OECD: “As part of our work on Innovative Citizen Participation, we’ve launched a series of articles to open a discussion and gather evidence on the use of digital tools and practices in representative deliberative processes. ….The current context is obliging policy makers and practitioners to think outside the box and adapt to the inability of physical deliberation. How can digital tools allow planned or ongoing processes like Citizens’ Assemblies to continue, ensuring that policy makers can still garner informed citizen recommendations to inform their decision making? New experiments are getting underway, and the evidence gathered could also be applied to other situations when face-to-face is not possible or more difficult like international processes or any situation that prevents physical gathering.

This series will cover the core phases that a representative deliberative process should follow, as established in the forthcoming OECD report: learning, deliberation, decision making, and collective recommendations. Due to the different nature of conducting a process online, we will additionally consider a phase required before learning: skills training. The articles will explore the use of digital tools at each phase, covering questions about the appropriate tools, methods, evidence, and limitations.

They will also consider how the use of certain digital tools could enhance good practice principles such as impact, transparency, and evaluation:

  • Impact: Digital tools can help participants and the public to better monitor the status of the proposed recommendations and the impact they had on final decision- making. A parallel can be drawn with the extensive use of this methodology by the United Nations for the monitoring and evaluation of the impact of the Sustainable Development Goals (SDGs).
  • Transparency: Digital tools can facilitate transparency across the process. The use of collaborative tools allows for transparency regarding who wrote the final outcome of the process (ability to trace the contributors of the document and the different versions). By publishing the code and the algorithms applied for the random selection (sortition) process and the data or statistics used for the stratification could give total transparency on how participants are selected.
  • Evaluation: Data collection and analysis can help researchers and policy makers assess the process (for e.g., deliberation quality, participant surveys, opinion evolution). Publishing this data in a structured and open format can allow for a broader evaluation and contribute to research. Over the course of the next year, the OECD will be preparing evaluation guidelines in accordance with the good practice principles to enable comparative data analysis.

The series will also consider how the use of emerging technologies and digital tools could complement face-to-face processes, for instance:

  • Artificial intelligence (AI) and text-based technologies (i.e. natural language processing, NLP): Could the use of AI-based tools enrich deliberative processes? For example: mapping opinion clusters, consensus building, analysis of massive inputs from external participants in the early stage of stakeholder input. Could NLP allow for simultaneous translation to other languages, feelings analysis, and automated transcription? These possibilities already exist, but raise more pertinent questions around reliability and user experience. How could they be connected to human analysis, discussion, and decision making?
  • Virtual/Augmented reality: Could the development of these emerging technologies allow participants to be immersed in virtual environments and thereby simulate face-to-face deliberation or experiences that enable and build empathy with possible futures or others’ lived experiences?…(More)”.

Epistemic Humility—Knowing Your Limits in a Pandemic

Curated on Posted on by Stefaan Verhulst

Essay by Erik Angner: “Ignorance,” wrote Charles Darwin in 1871, “more frequently begets confidence than does knowledge.”

Darwin’s insight is worth keeping in mind when dealing with the current coronavirus crisis. That includes those of us who are behavioral scientists. Overconfidence—and a lack of epistemic humility more broadly—can cause real harm.

In the middle of a pandemic, knowledge is in short supply. We don’t know how many people are infected, or how many people will be. We have much to learn about how to treat the people who are sick—and how to help prevent infection in those who aren’t. There’s reasonable disagreement on the best policies to pursue, whether about health care, economics, or supply distribution. Although scientists worldwide are working hard and in concert to address these questions, final answers are some ways away.

Another thing that’s in short supply is the realization of how little we know. Even a quick glance at social or traditional media will reveal many people who express themselves with way more confidence than they should…

Frequent expressions of supreme confidence might seem odd in light of our obvious and inevitable ignorance about a new threat. The thing about overconfidence, though, is that it afflicts most of us much of the time. That’s according to cognitive psychologists, who’ve studied the phenomenon systematically for half a century. Overconfidence has been called “the mother of all psychological biases.” The research has led to findings that are at the same time hilarious and depressing. In one classic study, for example, 93 percent of U.S. drivers claimed to be more skillful than the median—which is not possible.

“But surely,” you might object, “overconfidence is only for amateurs—experts would not behave like this.” Sadly, being an expert in some domain does not protect against overconfidence. Some research suggests that the more knowledgeable are more prone to overconfidence. In a famous study of clinical psychologists and psychology students, researchers asked a series of questions about a real person described in psychological literature. As the participants received more and more information about the case, their confidence in their judgment grew—but the quality of their judgment did not. And psychologists with a Ph.D. did no better than the students….(More)”.