Viruses Cross Borders. To Fight Them, Countries Must Let Medical Data Flow, Too

Curated on Posted on by Stefaan Verhulst

Nigel Cory at ITIF: “If nations could regulate viruses the way many regulate data, there would be no global pandemics. But the sad reality is that, in the midst of the worst global pandemic in living memory, many nations make it unnecessarily complicated and costly, if not illegal, for health data to cross their borders. In so doing, they are hindering critically needed medical progress.

In the COVID-19 crisis, data analytics powered by artificial intelligence (AI) is critical to identifying the exact nature of the pandemic and developing effective treatments. The technology can produce powerful insights and innovations, but only if researchers can aggregate and analyze data from populations around the globe. And that requires data to move across borders as part of international research efforts by private firms, universities, and other research institutions. Yet, some countries, most notably China, are stopping health and genomic data at their borders.

Indeed, despite the significant benefits to companies, citizens, and economies that arise from the ability to easily share data across borders, dozens of countries—across every stage of development—have erected barriers to cross-border data flows. These data-residency requirements strictly confine data within a country’s borders, a concept known as “data localization,” and many countries have especially strict requirements for health data.

China is a noteworthy offender, having created a new digital iron curtain that requires data localization for a range of data types, including health data, as part of its so-called “cyber sovereignty” strategy. A May 2019 State Council regulation required genomic data to be stored and processed locally by Chinese firms—and foreign organizations are prohibited. This is in service of China’s mercantilist strategy to advance its domestic life sciences industry. While there has been collaboration between U.S. and Chinese medical researchers on COVID-19, including on clinical trials for potential treatments, these restrictions mean that it won’t involve the transfer, aggregation, and analysis of Chinese personal data, which otherwise might help find a treatment or vaccine. If China truly wanted to make amends for blocking critical information during the early stages of the outbreak in Wuhan, then it should abolish this restriction and allow genomic and other health data to cross its borders.

But China is not alone in limiting data flows. Russia requires all personal data, health-related or not, to be stored locally. India’s draft data protection bill permits the government to classify any sensitive personal data as critical personal data and mandate that it be stored and processed only within the country. This would be consistent with recent debates and decisions to require localization for payments data and other types of data. And despite its leading role in pushing for the free flow of data as part of new digital trade agreements, Australia requires genomic and other data attached to personal electronic health records to be only stored and processed within its borders.

Countries also enact de facto barriers to health and genomic data transfers by making it harder and more expensive, if not impractical, for firms to transfer it overseas than to store it locally. For example, South Korea and Turkey require firms to get explicit consent from people to transfer sensitive data like genomic data overseas. Doing this for hundreds or thousands of people adds considerable costs and complexity.

And the European Union’s General Data Protection Regulation encourages data localization as firms feel pressured to store and process personal data within the EU given the restrictions it places on data transfers to many countries. This is in addition to the renewed push for local data storage and processing under the EU’s new data strategy.

Countries rationalize these steps on the basis that health data, particularly genomic data, is sensitive. But requiring health data to be stored locally does little to increase privacy or data security. The confidentiality of data does not depend on which country the information is stored in, only on the measures used to store it securely, such as via encryption, and the policies and procedures the firms follow in storing or analyzing the data. For example, if a nation has limits on the use of genomics data, then domestic organizations using that data face the same restrictions, whether they store the data in the country or outside of it. And if they share the data with other organizations, they must require those organizations, regardless of where they are located, to abide by the home government’s rules.

As such, policymakers need to stop treating health data differently when it comes to cross-border movement, and instead build technical, legal, and ethical protections into both domestic and international data-governance mechanisms, which together allow the responsible sharing and transfer of health and genomic data.

This is clearly possible—and needed. In February 2020, leading health researchers called for an international code of conduct for genomic data following the end of their first-of-its-kind international data-driven research project. The project used a purpose-built cloud service that stored 800 terabytes of genomic data on 2,658 cancer genomes across 13 data centers on three continents. The collaboration and use of cloud computing were transformational in enabling large-scale genomic analysis….(More)”.

Models v. Evidence

Curated on Posted on by Stefaan Verhulst

Jonathan Fuller at the Boston Review: “COVID-19 has revealed a contest between two competing philosophies of scientific knowledge. To manage the crisis, we must draw on both….The lasting icon of the COVID-19 pandemic will likely be the graphic associated with “flattening the curve.” The image is now familiar: a skewed bell curve measuring coronavirus cases that towers above a horizontal line—the health system’s capacity—only to be flattened by an invisible force representing “non-pharmaceutical interventions” such as school closures, social distancing, and full-on lockdowns.

How do the coronavirus models generating these hypothetical curves square with the evidence? What roles do models and evidence play in a pandemic? Answering these questions requires reconciling two competing philosophies in the science of COVID-19.

To some extent, public health epidemiology and clinical epidemiology are distinct traditions in health care, competing philosophies of scientific knowledge.

In one camp are infectious disease epidemiologists, who work very closely with institutions of public health. They have used a multitude of models to create virtual worlds in which sim viruses wash over sim populations—sometimes unabated, sometimes held back by a virtual dam of social interventions. This deluge of simulated outcomes played a significant role in leading government actors to shut borders as well as doors to schools and businesses. But the hypothetical curves are smooth, while real-world data are rough. Some detractors have questioned whether we have good evidence for the assumptions the models rely on, and even the necessity of the dramatic steps taken to curb the pandemic. Among this camp are several clinical epidemiologists, who typically provide guidance for clinical practice—regarding, for example, the effectiveness of medical interventions—rather than public health.

The latter camp has won significant media attention in recent weeks. Bill Gates—whose foundation funds the research behind the most visible outbreak model in the United States, developed by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington—worries that COVID-19 might be a “once-in-a-century pandemic.” A notable detractor from this view is Stanford’s John Ioannidis, a clinical epidemiologist, meta-researcher, and reliable skeptic who has openly wondered whether the coronavirus pandemic might rather be a “once-in-a-century evidence fiasco.” He argues that better data are needed to justify the drastic measures undertaken to contain the pandemic in the United States and elsewhere.

Ioannidis claims, in particular, that our data about the pandemic are unreliable, leading to exaggerated estimates of risk. He also points to a systematic review published in 2011 of the evidence regarding physical interventions that aim to reduce the spread of respiratory viruses, worrying that the available evidence is nonrandomized and prone to bias. (A systematic review specific to COVID-19 has now been published; it concurs that the quality of evidence is “low” to “very low” but nonetheless supports the use of quarantine and other public health measures.) According to Ioannidis, the current steps we are taking are “non-evidence-based.”…(More)”.

10 transformative data questions related to gender

Curated on Posted on by Stefaan Verhulst

Press Release: “As part of efforts to identify priorities across sectors in which data and data science could make a difference, The Governance Lab (The GovLab) at the New York University Tandon School of Engineering has partnered with Data2X, the gender data alliance housed at the United Nations Foundation, to release ten pressing questions on gender that experts have determined can be answered using data. Members of the public are invited to share their views and vote to help develop a data agenda on gender.

The questions are part of the 100 Questions Initiative, an effort to identify the most important societal questions that can be answered by data. The project relies on an innovative process of sourcing “bilinguals,” individuals with both subject-matter and data expertise, who in this instance provided questions related to gender they considered to be urgent and answerable. The results span issues of labor, health, climate change, and gender-based violence.

Through the initiative’s new online platform, anyone can now vote on what they consider to be the most pressing, data-related questions about gender that researchers and institutions should prioritize. Through voting, the public can steer the conversation and determine which topics should be the subject of data collaboratives, an emerging form of collaboration that allows organizations from different sectors to exchange data to create public value.

The GovLab has conducted significant research on the value and practice of data collaboratives, and its research shows that inter-sectoral collaboration can both increase access to data as well as unleash the potential of that data to serve the public good.

Data2X supported the 100 Questions Initiative by providing expertise and connecting The GovLab with relevant communities, events, and resources. The initiative helped inform Data2X’s “Big Data, Big Impact? Towards Gender-Sensitive Data Systems” report, which identifies gaps of information on gender equality across key policy domains.

“Asking the right questions is a critical first step in fostering data production and encouraging data use to truly meet the unique experiences and needs of women and girls,” said Emily Courey Pryor, executive director of Data2X. “Obtaining public feedback is a crucial way to identify the most urgent questions — and to ultimately incentivize investment in gender data collection and use to find the answers.”Said Stefaan Verhulst, co-founder and chief research and development officer at The GovLab, “Sourcing and prioritizing questions related to gender can inform resource and funding allocation to address gender data gaps and support projects with the greatest potential impact. This way, we can be confident about solutions that address the challenges facing women and girls.”…(More)”.

The institutionalization of digital public health: lessons learned from the COVID19 app

Curated on Posted on by Stefaan Verhulst

Paper by Ciro Cattuto and Alessandro Spina: “Amid the outbreak of the SARS-CoV-2 pandemic, there has been a call to use innovative digital tools for the purpose of protecting public health. There are a number of proposals to embed digital solutions into the regulatory strategies adopted by public authorities to control the spread of the coronavirus more effectively. They range from algorithms to detect population movements by using telecommunication data to the use of artificial intelligence and high-performance computing power to detect patterns in the spread of the virus. However, the use of a mobile phone application for contact tracing is certainly the most popular.

These proposals, which have a very powerful persuasive force, and have apparently contributed to the success of public health response in a few Asian countries, also raise questions and criticisms in particular with regard to the risks that these novel digital surveillance systems pose for privacy and in the long term for our democracies.

With this short paper, we would like to describe the pattern that has led to the institutionalization of digital tools for public health purposes. By tracing their origins to “digital epidemiology”, an approach originated in the early 2010s, we will expose that, whilst there exists limited experimental knowledge on the use of digital tools for tracking disease, this is the first time in which they are being introduced by policy-makers into the set of non-clinical emergency strategies to a major public health crisis….(More)”

Lie Machines: How to Save Democracy from Troll Armies, Deceitful Robots, Junk News Operations, and Political Operatives

Curated on Posted on by Stefaan Verhulst

Book by Philip N. Howard: “Artificially intelligent “bot” accounts attack politicians and public figures on social media. Conspiracy theorists publish junk news sites to promote their outlandish beliefs. Campaigners create fake dating profiles to attract young voters. We live in a world of technologies that misdirect our attention, poison our political conversations, and jeopardize our democracies. With massive amounts of social media and public polling data, and in-depth interviews with political consultants, bot writers, and journalists, Philip N. Howard offers ways to take these “lie machines” apart.
 
Lie Machines is full of riveting behind-the-scenes stories from the world’s biggest and most damagingly successful misinformation initiatives—including those used in Brexit and U.S. elections. Howard not only shows how these campaigns evolved from older propaganda operations but also exposes their new powers, gives us insight into their effectiveness, and explains how to shut them down…(More)”.

Using crowdsourcing for a safer society: When the crowd rules

Curated on Posted on by Stefaan Verhulst

Paper by Enrique Estellés-Arolas: “Neighbours sharing information about robberies in their district through social networking platforms, citizens and volunteers posting about the irregularities of political elections on the Internet, and internauts trying to identify a suspect of a crime: in all these situations, people who share different degrees of relationship collaborate through the Internet and other technologies to try to help with or solve an offence. T

he crowd, which is sometimes seen as a threat, in these cases becomes an invaluable resource that can complement law enforcement through collective intelligence. Owing to the increasing growth of such initiatives, this article conducts a systematic review of the literature to identify the elements that characterize them and to find the conditions that make them work successfully….(More)”.

Responsible Data Toolkit

Curated on Posted on by Stefaan Verhulst

Andrew Young at The GovLab: “The GovLab and UNICEF, as part of the Responsible Data for Children initiative (RD4C), are pleased to share a set of user-friendly tools to support organizations and practitioners seeking to operationalize the RD4C Principles. These principles—Purpose-Driven, People-Centric, Participatory, Protective of Children’s Rights, Proportional, Professionally Accountable, and Prevention of Harms Across the Data Lifecycle—are especially important in the current moment, as actors around the world are taking a data-driven approach to the fight against COVID-19.

The initial components of the RD4C Toolkit are:

The RD4C Data Ecosystem Mapping Tool intends to help users to identify the systems generating data about children and the key components of those systems. After using this tool, users will be positioned to understand the breadth of data they generate and hold about children; assess data systems’ redundancies or gaps; identify opportunities for responsible data use; and achieve other insights.

The RD4C Decision Provenance Mapping methodology provides a way for actors designing or assessing data investments for children to identify key decision points and determine which internal and external parties influence those decision points. This distillation can help users to pinpoint any gaps and develop strategies for improving decision-making processes and advancing more professionally accountable data practices.

The RD4C Opportunity and Risk Diagnostic provides organizations with a way to take stock of the RD4C principles and how they might be realized as an organization reviews a data project or system. The high-level questions and prompts below are intended to help users identify areas in need of attention and to strategize next steps for ensuring more responsible handling of data for and about children across their organization.

Finally, the Data for Children Collaborative with UNICEF developed an Ethical Assessment that “forms part of [their] safe data ecosystem, alongside data management and data protection policies and practices.” The tool reflects the RD4C Principles and aims to “provide an opportunity for project teams to reflect on the material consequences of their actions, and how their work will have real impacts on children’s lives.

RD4C launched in October 2019 with the release of the RD4C Synthesis Report, Selected Readings, and the RD4C Principles. Last month we published the The RD4C Case Studies, which analyze data systems deployed in diverse country environments, with a focus on their alignment with the RD4C Principles. The case studies are: Romania’s The Aurora Project, Childline Kenya, and Afghanistan’s Nutrition Online Database.

To learn more about Responsible Data for Children, visit rd4c.org or contact rd4c [at] thegovlab.org. To join the RD4C conversation and be alerted to future releases, subscribe at this link.”

Continuity in Legislatures Amid COVID-19

Curated on Posted on by Stefaan Verhulst

Blog by Sam DeJohn, Anirudh Dinesh, and Dane Gambrell: “As COVID-19 changes how we work, governments everywhere are experimenting with new ways to adapt and continue legislative operations under current physical restrictions. From city councils to state legislatures and national parliaments, more public servants are embracing and advocating for the use of new technologies to convene, deliberate, and vote.

On April 20th, GovLab published an initial overview of such efforts in the latest edition of the CrowdLaw Communique. As the United States Congress wrestles with the question of whether to allow remote voting, the GovLab has compiled an update on those international and state legislatures that are the furthest ahead with the use of new technology to continue operations.

NORTH AMERICA

In the US, On April 16, over 60 former members of Congress participated in a “Mock Remote Hearing” exercise to test the viability of online proceedings during the COVID-19 pandemic.

In Kentucky, when they last met on April 1, that State’s House of Representatives adopted new rules allowing lawmakers to vote remotely by sending in photos of a ballot to designated managers on the House Floor.” (WFPL). Lawmakers have also altered voting procedures to limit the number of lawmakers on the House floor. Members will vote in groups of 25 and may vote by paper ballot (NCSL).

New Jersey lawmakers made history on March 25 when members of the General Assembly called into a conference line to cast their votes remotely on several bills related to the coronavirus pandemic. NJ lawmakers moved 12 bills that day via remote voting.

On the west coast of the United States, the city council of Kirkland, Washington, recently held its first virtual city council meeting. Many cities and counties in California have also begun holding their meetings via Zoom.

As compiled by the National Council of State Legislatures, states that have changed rules — many just in the past few weeks — to allow full committee action and/or remote voting include: Iowa, Kentucky, Minnesota, New Jersey, North Carolina, Utah, and Vermont. Other states have specifically said they are seriously considering allowing remote action, including New Hampshire, New Mexico, New York, and Wyoming.

EUROPE

In the European Union, Parliament is temporarily allowing remote participation to avoid spreading COVID-19 (Library of Congress). With regard to voting, all members, even those participating in person, will receive a ballot sent by email to their official email address. The ballot, which must contain the name and vote of the MP in a readable form and the MP’s signature, must be returned from their official email address to the committee or plenary services in order to be counted. The ballot must be received in the dedicated official European Parliament mailbox by the time the vote is closed.

In Spain, MPs have been casting votes using the Congress’s intranet system, which has been in place since 2012. Rather than voting in real time, voting is typically open for a two-hour period before the session to vote for the alternative or amendment proposals and for a two-hour period following the session in which the proposals are debated to vote the final text….(More)”.

How ‘Social Distancing’ Can Get Lost in Translation

Curated on Posted on by Stefaan Verhulst

Ruth Michaelson at the Smithsonian Magazine: “…Even as tongue-in-cheek phrases like “avoiding the Rona” abound on American social media, to say nothing of the rapper Cardi B’s enunciation of “coronavirus,” other terms like “social distancing,” or “lockdown,” have quickly entered our daily vocabulary.

But what these terms mean in different countries (or regions or cities within regions, in Wuhan’s case) is a question of translation as well as interpretation. Communities around the world remain under government-enforced lockdown to prevent the spread of COVID-19, but few have understood “stay at home,” or liu-zai-jia-li in Mandarin, to mean precisely the same thing. The concept of social distancing, normally indicating a need to avoid contact with others, can mean anything from avoiding public transport to the World Health Organization’s recommendation to “maintain at least one metre distance,” from those who are coughing or sneezing. In one Florida county, officials explained the guideline by suggesting to residents they stay “one alligator” away from each other.

The way that terms like “social distancing,” are adopted across languages provides a way to understand how countries across the globe are coping with the COVID-19 threat. For instance, the Mandarin Chinese translation of “social distancing”, or ju-li-yuan-dian, is interpreted differently in Wuhan dialect, explains Jin. “Instead of ‘keep a distance,’ Wuhan dialect literally translates this as ‘send far away.’”

Through these small shifts in language, says Jin, “people in Wuhan expose their feelings about their own suffering.”

In Sweden, meanwhile, has currently registered more than 16,000 cases of COVID-19, the highest incidence rate in Scandinavia. The government has taken an unusually lax approach to enforcing its pandemic mitigation policies, placing the emphasis on citizens to self-police, perhaps to ill effect. While Swedes do use terms like social distancing, or rather the noun socialt avstånd, these are accompanied by other ideas that are more popular in Sweden. “Herd immunity or flockimmunitet is a very big word around here,” says Jan Pedersen, director of the Institute for Interpreting and Translation Studies at Stockholm University.

“Sweden is famous for being a very consensus driven society, and this applies here as well,” he says. “There’s a great deal of talk about trust.” In this case, he explained, citizens have trust – tillit – in the authorities to make good choices and so choose to take personligt ansvar, or personal responsibility.

Pedersen has also noticed some new language developing as a result. “The word recommendation, rekommendationer, in Sweden has taken on much stronger force,” he said. “Recommendation used to be a recommendation, what you could do or not. Now it’s slightly stronger … We would use words like obey with laws, but now here you obey a recommendation, lyda rekommendationer.”…(More)”.

Digital tools against COVID-19: Framing the ethical challenges and how to address them

Curated on Posted on by Stefaan Verhulst

Paper by Urs Gasser et al: “Data collection and processing via digital public health technologies are being promoted worldwide by governments and private companies as strategic remedies for mitigating the COVID-19 pandemic and loosening lockdown measures. However, the ethical and legal boundaries of deploying digital tools for disease surveillance and control purposes are unclear, and a rapidly evolving debate has emerged globally around the promises and risks of mobilizing digital tools for public health. To help scientists and policymakers navigate technological and ethical uncertainty, we present a typology of the primary digital public health applications currently in use. Namely: proximity and contact tracing, symptom monitoring, quarantine control, and flow modeling. For each, we discuss context-specific risks, cross-sectional issues, and ethical concerns. Finally, in recognition of the need for practical guidance, we propose a navigation aid for policymakers made up of ten steps for the ethical use of digital public health tools….(More)”.