Stefaan Verhulst

The Global Indigenous Data Alliance: “The current movement toward open data and open science does not fully engage with Indigenous Peoples rights and interests. Existing principles within the open data movement (e.g. FAIR: findable, accessible, interoperable, reusable) primarily focus on characteristics of data that will facilitate increased data sharing among entities while ignoring power differentials and historical contexts. The emphasis on greater data sharing alone creates a tension for Indigenous Peoples who are also asserting greater control over the application and use of Indigenous data and Indigenous Knowledge for collective benefit.

This includes the right to create value from Indigenous data in ways that are grounded in Indigenous worldviews and realise opportunities within the knowledge economy. The CARE Principles for Indigenous Data Governance are people and purpose-oriented, reflecting the crucial role of data in advancing Indigenous innovation and self-determination. These principles complement the existing FAIR principles encouraging open and other data movements to consider both people and purpose in their advocacy and pursuits….(More)”.

Kevin Roose at The New York Times:”…There is no use sugarcoating the virus, which has already had devastating consequences for people all over the world, and may get much worse in the months ahead. There will be more lives lost, businesses closed and communities thrown into financial hardship. Nobody is arguing that what is coming will be fun, easy or anything remotely approaching normal for a very long time.

But if there is a silver lining in this crisis, it may be that the virus is forcing us to use the internet as it was always meant to be used — to connect with one another, share information and resources, and come up with collective solutions to urgent problems. It’s the healthy, humane version of digital culture we usually see only in schmaltzy TV commercials, where everyone is constantly using a smartphone to visit far-flung grandparents and read bedtime stories to kids.

Already, social media seems to have improved, with more reliable information than might have been expected from a global pandemic. And while the ways we’re substituting for in-person interaction aren’t perfect — over the next few months in America, there may be no phrase uttered more than “Can someone mute?” — we are seeing an explosion of creativity as people try to use technology as a bridge across physical distances.

Just look at what’s happening in Italy, where homebound adults are posting mini-manifestos on Facebook, while restless kids flock to multiplayer online games like Fortnite. Or see what’s happening in China, where would-be partyers have invented “cloud clubbing,” a new kind of virtual party in which D.J.s perform live sets on apps like TikTok and Douyin while audience members react in real time on their phones. Or observe how we’re coping in the United States, where groups are experimenting with new kinds of socially distanced gatherings: virtual yoga classes, virtual church services, virtual dinner parties.

These are the kinds of creative digital experiments we need, and they are coming at a time when we need them more than ever….(More)”

Book by Anna Feigenbaum and Aria Alamalhodaei: “From tracking down information to symbolising human experiences, this book is your guide to telling more effective, empathetic and evidence-based data stories.

Drawing on cross-disciplinary research and first-hand accounts of projects ranging from public health to housing justice, The Data Storytelling Workbook introduces key concepts, challenges and problem-solving strategies in the emerging field of data storytelling. Filled with practical exercises and activities, the workbook offers interactive training materials that can be used for teaching and professional development. By approaching both ‘data’ and ‘storytelling’ in a broad sense, the book combines theory and practice around real-world data storytelling scenarios, offering critical reflection alongside practical and creative solutions to challenges in the data storytelling process, from tracking down hard to find information, to the ethics of visualising difficult subjects like death and human rights….(More)”.

Paper by Aichida Ul-Aflaha, Mary McNeil and Saki Kumagai: “This paper summarizes the World Bank’s knowledge on open, participatory, and responsive governance. It offers a rethinking and broadening of the term “open government” in light of the World Bank Group’s Strategic Framework for Mainstreaming Citizen Engagement in World Bank Group Operations and World Development Report 2017: Governance and the Law. The building blocks of open government are documented based on experience and growing trends. The paper also tries to identify new frontiers and presents a summary of action steps for advancing the open, participatory, and responsive governance agenda within the World Bank….(More)”.

Stuart Rennie, Mara Buchbinder, Eric Juengst, Lauren Brinkley-Rubinstein, and David L Rosen at Public Health Ethics: “Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that “scrapes” public websites of U.S. county jails as part of an effort to develop a comprehensive database (including individual-level jail incarcerations, court records and confidential HIV records) to enhance HIV surveillance and improve continuity of care for incarcerated populations. We argue that the well-known framework of Emanuel et al. (2000) provides only partial ethical guidance for the activities we describe, which lie at a complex intersection of public health research and public health practice. We suggest some ethical considerations from the ethics of public health practice to help fill gaps in this relatively unexplored area….(More)”.

Nicole Wetsman at the Verge: “…The balance between protecting individual privacy and collecting information that is critical to the public good changes over the course of a disease’s spread. The amount of data public health officials need to collect and disclose changes as well. Right now, the COVID-19 pandemic is accelerating, and there is still a lot doctors and scientists don’t know about the disease. Collecting detailed health information is, therefore, more useful and important. That could change as the outbreak progresses, Lee says.

For example, as the virus starts to circulate in the community, it might not be as important to know exactly where a sick person has been. If the virus is everywhere already, that information won’t have as much additional benefit to the community. “It depends a lot on the maturity of an epidemic,” she says.

Digital tracking information is ubiquitous today, and that can make data collection easier. In Singapore, where there’s extensive surveillance, publicly available data details where people with confirmed cases of COVID-19 are and have been. The Iranian government built an app for people to check their symptoms that also included a geo-tracking feature. When deciding to use those types of tools, Lee says, the same public health principles should still apply.

“Should a public health official know where a person has gone, should that be public information — it’s not different. It’s a lot easier to do that now, but it doesn’t make it any more right or less right,” she says. “Tracking where people go and who they interact with is something public health officials have been doing for centuries. It’s just easier with digital information.”

In addition, just because personal information about a person and their health is important to a public health official, it doesn’t mean that information is important for the general public. It’s why, despite questioning from reporters, public health officials only gave out a limited amount of information on the people who had the first few cases of COVID-19 in the US…

Health officials worry about the stigmatization of individuals or communities affected by diseases, which is why they aim to disclose only necessary information to the public. Anti-Asian racism in the US and other countries around the world spiked with the outbreak because the novel coronavirus originated in China. People who were on cruise ships with positive cases reported fielding angry phone calls from strangers when they returned home, and residents of New Rochelle, New York, which is the first containment zone in the US, said that they’re worried about their hometown being forever associated with the virus.

“This kind of group-level harm is concerning,” Lee says. “That’s why we worry about group identity privacy, as well. I’m nervous and sad to see that starting to poke its head out.”

People can’t expect the same level of personal health privacy during public health emergencies involving infectious diseases as they can in other elements of their health. But the actions public health officials can take, like collecting information, aren’t designed to limit privacy, Fairchild says. “It’s to protect the broader population. The principle we embrace is the principle of reciprocity. We recognize that our liberty is limited, but we are doing that for others.”…(More)”.

Chapter by Artur Rot, Małgorzata Sobińska, Marcin Hernes, and Bogdan Franczyk: “Proper understanding of blockchain technology is one of key importance for decision-makers and staff in public administration sectors, as it helps them decide whether this approach can be of practical use in the realisation of their statutory mission. Blockchain technology is often perceived as a failsafe and unbreakable system with potential to transform many segments of the economy. Blockchain solutions have already been employed with success as basis for digital transactions in such areas as electricity market, trade, cryptocurrencies, stock trading, etc. Their application potential is also actively explored in other sectors of the economy, such as banking, insurance, and public administration.

Blockchain technology can be approached not only as an innovative solution, but also as a tool for effective creation of novel management practices and models of operation in various types of organizations and institutions. The contribution of the chapter is an evaluation of potential uses and conditions for the effective application of the blockchain technology in the public administration sector. The study is constructed on the fundament of literature studies, empirical observations, case study analyses and synthetic evaluations, with the aim of revealing the potential applications of the blockchain technology and highlighting the challenges and possible directions of blockchain research in the public sector….(More)”.

Article by Kathy Peach: “Tackling the emergence of a new global pandemic is a complex task. But collective intelligence is now being used around the world by communities and governments to respond.

At its simplest, collective intelligence is the enhanced capacity created when distributed groups of people work together, often with the help of technology, to mobilise more information, ideas and insights to solve a problem.

Advances in digital technologies have transformed what can be achieved through collective intelligence in recent years – connecting more of us, augmenting human intelligence with machine intelligence, and helping us to generate new insights from novel sources of data. It is particularly suited to addressing fast-evolving, complex global problems such as disease outbreaks.

Here are seven ways it is tackling the coronavirus pandemic:

1. Predicting and modelling outbreaks

On the December 31, 2019, health monitoring platform Blue Dot alerted its clients to the outbreak of a flu-like virus in Wuhan, China – nine days before the World Health Organization (WHO) released a statement about it. It then correctly predicted that the virus would jump from Wuhan to Bangkok, Seoul, Taipei and Tokyo.

Blue Dot combines existing data sets to create new insights. Natural language processing, the AI methods that understand and translate human-generated text, and machine learning techniques that learn from large volumes of data, sift through reports of disease outbreaks in animals, news reports in 65 languages, and airline passenger information. It supplements the machine-generated model with human intelligence, drawing on diverse expertise from epidemiologists to veterinarians and ecologists to ensure that its conclusions are valid.

2. Citizen science

The BBC carried out a citizen science project in 2018, which involved members of the public in generating new scientific data about how infections spread. People downloaded an app that monitored their GPS position every hour, and asked them to report who they had encountered or had contact with that day….(More).

Michael Hallsworth at Behavioral Scientist: “Why don’t we wash our hands as much as we should?

Behavioral science can help identify some of the key barriers. It may also suggest what might make a difference for COVID-19 in the absence of a vaccine, recognizing that there is much we still do not know about this virus.

The first barrier may be a lack of awareness about the effectiveness of soap, water, and scrubbing. People may simply not realize how well specific handwashing actions can prevent the spread of infectious disease. This is why many public health agencies run educational campaigns, which may have varying effects based on how far they take evidence about behavior into account.

For example, last weekend the Behavioural Insights Team (BIT), the organization for which I work, ran a set of online trials with 3,500 U.K. adults to test the impact of various posters on people’s intended handwashing behavior. We found that posters seemed to have stronger effects on people who were already washing their hands more frequently. In other words, the more compliant people got more compliant. Obviously, this is a real problem for infection control.

One specific issue with COVID-19 may be that people’s attention is being drawn to something else instead: face masks. In many countries, face masks in public are uncommon. Therefore, people in these places are more likely to notice when others are wearing masks, since doing so is visible and novel—unlike washing of hands! This may create the perception that wearing a face mask is the priority for preventing infection.

There are benefits from face masks, but we still lack evidence about how they are used or whether they work if worn by people who are not yet infected. At least one study suggests that on their own they may be less effective than handwashing at preventing transmission. And given that there’s a limited supply, face masks need to be reserved for the people and situations where they can do the most good.

Perhaps the main concern is that people may have a risk thermostat, whereby taking protective measures in one area means that they feel greater license to take risks in another. Obtaining a face mask may make people feel more protected and could mean they make less of an effort to wash their hands adequately.

Awareness is unlikely to be enough on its own. We also need to consider availability. In some instances, there are practical barriers to handwashing—water, soap, and drying materials may not be available. People may be aware of what they should do but be unable to follow through. One obvious solution is to increase the provision of alcohol-based hand sanitizer dispensers at locations where handwashing is infeasible. Doing this has been shown to improve hand hygiene on its own.

However, behavioral science shows that not all “availability” is equal: even small increases in required effort may result in a hand sanitizer going unused. Therefore, those providing hand sanitizer should also consider whether they’ve made usage as convenient as possible. How can dispensers be located so people do not have to make detours to use them? How can the dispensers be made more prominent—like the use of color? Where do people normally have to pause, thus making them more open to usage—like waiting for an elevator?…(More)”.

Book by Dan Heath: “So often in life, we get stuck in a cycle of response. We put out fires. We deal with emergencies. We stay downstream, handling one problem after another, but we never make our way upstream to fix the systems that caused the problems. Cops chase robbers, doctors treat patients with chronic illnesses, and call-center reps address customer complaints. But many crimes, chronic illnesses, and customer complaints are preventable. So why do our efforts skew so heavily toward reaction rather than prevention?

Upstream probes the psychological forces that push us downstream—including “problem blindness,” which can leave us oblivious to serious problems in our midst. And Heath introduces us to the thinkers who have overcome these obstacles and scored massive victories by switching to an upstream mindset. One online travel website prevented twenty million customer service calls every year by making some simple tweaks to its booking system. A major urban school district cut its dropout rate in half after it figured out that it could predict which students would drop out—as early as the ninth grade. A European nation almost eliminated teenage alcohol and drug abuse by deliberately changing the nation’s culture. And one EMS system accelerated the emergency-response time of its ambulances by using data to predict where 911 calls would emerge—and forward-deploying its ambulances to stand by in those areas.

Upstream delivers practical solutions for preventing problems rather than reacting to them. How many problems in our lives and in society are we tolerating simply because we’ve forgotten that we can fix them?…(More)”.