A Taxonomy of Definitions for the Health Data Ecosystem

Curated on Posted on by Stefaan Verhulst

Announcement: “Healthcare technologies are rapidly evolving, producing new data sources, data types, and data uses, which precipitate more rapid and complex data sharing. Novel technologies—such as artificial intelligence tools and new internet of things (IOT) devices and services—are providing benefits to patients, doctors, and researchers. Data-driven products and services are deepening patients’ and consumers’ engagement and helping to improve health outcomes. Understanding the evolving health data ecosystem presents new challenges for policymakers and industry. There is an increasing need to better understand and document the stakeholders, the emerging data types and their uses.

The Future of Privacy Forum (FPF) and the Information Accountability Foundation (IAF) partnered to form the FPF-IAF Joint Health Initiative in 2018. Today, the Initiative is releasing A Taxonomy of Definitions for the Health Data Ecosystem; the publication is intended to enable a more nuanced, accurate, and common understanding of the current state of the health data ecosystem. The Taxonomy outlines the established and emerging language of the health data ecosystem. The Taxonomy includes definitions of:

  • The stakeholders currently involved in the health data ecosystem and examples of each;
  • The common and emerging data types that are being collected, used, and shared across the health data ecosystem;
  • The purposes for which data types are used in the health data ecosystem; and
  • The types of actions that are now being performed and which we anticipate will be performed on datasets as the ecosystem evolves and expands.

This report is as an educational resource that will enable a deeper understanding of the current landscape of stakeholders and data types….(More)”.

Can tracking people through phone-call data improve lives?

Curated on Posted on by Stefaan Verhulst

Amy Maxmen in Nature: “After an earthquake tore through Haiti in 2010, killing more than 100,000 people, aid agencies spread across the country to work out where the survivors had fled. But Linus Bengtsson, a graduate student studying global health at the Karolinska Institute in Stockholm, thought he could answer the question from afar. Many Haitians would be using their mobile phones, he reasoned, and those calls would pass through phone towers, which could allow researchers to approximate people’s locations. Bengtsson persuaded Digicel, the biggest phone company in Haiti, to share data from millions of call records from before and after the quake. Digicel replaced the names and phone numbers of callers with random numbers to protect their privacy.

Bengtsson’s idea worked. The analysis wasn’t completed or verified quickly enough to help people in Haiti at the time, but in 2012, he and his collaborators reported that the population of Haiti’s capital, Port-au-Prince, dipped by almost one-quarter soon after the quake, and slowly rose over the next 11 months1. That result aligned with an intensive, on-the-ground survey conducted by the United Nations.

Humanitarians and researchers were thrilled. Telecommunications companies scrutinize call-detail records to learn about customers’ locations and phone habits and improve their services. Researchers suddenly realized that this sort of information might help them to improve lives. Even basic population statistics are murky in low-income countries where expensive household surveys are infrequent, and where many people don’t have smartphones, credit cards and other technologies that leave behind a digital trail, making remote-tracking methods used in richer countries too patchy to be useful.

Since the earthquake, scientists working under the rubric of ‘data for good’ have analysed calls from tens of millions of phone owners in Pakistan, Bangladesh, Kenya and at least two dozen other low- and middle-income nations. Humanitarian groups say that they’ve used the results to deliver aid. And researchers have combined call records with other information to try to predict how infectious diseases travel, and to pinpoint locations of poverty, social isolation, violence and more (see ‘Phone calls for good’)….(More)”.

Platforms that trigger innovation

Curated on Posted on by Stefaan Verhulst

Report by the Caixa Foundation: “…The Work4Progress programme thus supports the creation of “Open Innovation Platforms for the creation of employment in Peru, India and Mozambique” by means of collaborative partnerships between local civil society organisations, private sector, administration, universities and Spanish NGOs.

The main innovation of this programme is the incorporation of new tools and methodologies in: (1) listening and identification of community needs, (2) the co-creation and prototyping of new solutions, (3) the exploration of instruments for scaling, (4) governance, (5) evolving evaluation systems and (6) financing strategies. The goal of all of the above is to try to incorporate innovation strategies comprehensively in all components.

Work4Progress has been designed with a Think-and-Do-Tank mentality. The
member organisations of the platforms are experimenting in the field, while a group of international experts helps us to obtain this knowledge and share it with centres of thought and action at international level. In fact, this is the objective of this publication: to share the theoretical framework of the programme, to connect these ideas with concrete examples and to continue to strengthen the meeting point between social innovation and development cooperation.

Work4Progress is offered as a ‘living lab’ to test new methodologies that may be useful for other philanthropic institutions, governments or entities specialising in international development….(More)”.

The Geopolitics of Information

Curated on Posted on by Stefaan Verhulst

Paper by Eric Rosenbach and Katherine Mansted: “Information is now the world’s most consequential and contested geopolitical resource. The world’s most profitable businesses have asserted for years that data is the “new oil.” Political campaigns—and foreign intelligence operatives—have shown over the past two American presidential elections that data-driven social media is the key to public opinion. Leading scientists and technologists understand that good datasets, not just algorithms, will give them a competitive edge.

Data-driven innovation is not only disrupting economies and societies; it is reshaping relations between nations. The pursuit of information power—involving states’ ability to use information to influence, decide, create and communicate—is causing states to rewrite their terms of engagement with markets and citizens, and to redefine national interests and strategic priorities. In short, information power is altering the nature and behavior of the fundamental building block of international relations, the state, with potentially seismic consequences.

Authoritarian governments recognize the strategic importance of information and over the past five years have operationalized powerful domestic and international information strategies. They are cauterizing their domestic information environments and shutting off their citizens from global information flows, while weaponizing information to attack and destabilize democracies. In particular, China and Russia believe that strategic competition in the 21st century is characterized by a zero-sum contest for control of data, as well as the technology and talent needed to convert data into useful information.

Democracies remain fundamentally unprepared for strategic competition in the Information Age. For the United States in particular, as the importance of information as a geopolitical resource has waxed, its information dominance has waned. Since the end of the Cold War, America’s supremacy in information technologies seemed unassailable—not least because of its central role in creating the Internet and overall economic primacy. Democracies have also considered any type of information strategy to be largely unneeded: government involvement in the domestic information environment feels Orwellian, while democracies believed that their “inherently benign” foreign policy didn’t need extensive influence operations.

However, to compete and thrive in the 21st century, democracies, and the United States in particular, must develop new national security and economic strategies that address the geopolitics of information. In the 20th century, market capitalist democracies geared infrastructure, energy, trade, and even social policy to protect and advance that era’s key source of power—manufacturing. In this century, democracies must better account for information geopolitics across all dimensions of domestic policy and national strategy….(More)”.

Beyond Bias: Re-Imagining the Terms of ‘Ethical AI’ in Criminal Law

Curated on Posted on by Stefaan Verhulst

Paper by Chelsea Barabas: “Data-driven decision-making regimes, often branded as “artificial intelligence,” are rapidly proliferating across the US criminal justice system as a means of predicting and managing the risk of crime and addressing accusations of discriminatory practices. These data regimes have come under increased scrutiny, as critics point out the myriad ways that they can reproduce or even amplify pre-existing biases in the criminal justice system. This essay examines contemporary debates regarding the use of “artificial intelligence” as a vehicle for criminal justice reform, by closely examining two general approaches to, what has been widely branded as, “algorithmic fairness” in criminal law: 1) the development of formal fairness criteria and accuracy measures that illustrate the trade-offs of different algorithmic interventions and 2) the development of “best practices” and managerialist standards for maintaining a baseline of accuracy, transparency and validity in these systems.

The essay argues that attempts to render AI-branded tools more accurate by addressing narrow notions of “bias,” miss the deeper methodological and epistemological issues regarding the fairness of these tools. The key question is whether predictive tools reflect and reinforce punitive practices that drive disparate outcomes, and how data regimes interact with the penal ideology to naturalize these practices. The article concludes by calling for an abolitionist understanding of the role and function of the carceral state, in order to fundamentally reformulate the questions we ask, the way we characterize existing data, and how we identify and fill gaps in existing data regimes of the carceral state….(More)”

Virtual Briefing at the Supreme Court

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Paper by Alli Orr Larsen and Jeffrey L. Fisher: “The open secret of Supreme Court advocacy in a digital era is that there is a new way to argue to the Justices. Today’s Supreme Court arguments are developed online: They are dissected and explored in blog posts, fleshed out in popular podcasts, and analyzed and re-analyzed by experts who do not represent parties or have even filed a brief in the case at all. This “virtual briefing” (as we call it) is intended to influence the Justices and their law clerks but exists completely outside of traditional briefing rules. This article describes virtual briefing and makes a case that the key players inside the Court are listening. In particular, we show that the Twitter patterns of law clerks indicate they are paying close attention to producers of virtual briefing, and threads of these arguments (proposed and developed online) are starting to appear in the Court’s decisions.

We argue that this “crowdsourcing” dynamic to Supreme Court decision-making is at least worth a serious pause. There is surely merit to enlarging the dialogue around the issues the Supreme Court decides – maybe the best ideas will come from new voices in the crowd. But the confines of the adversarial process have been around for centuries, and there are significant risks that come with operating outside of it particularly given the unique nature and speed of online discussions. We analyze those risks in this article and suggest it is time to think hard about embracing virtual briefing — truly assessing what can be gained and what will be lost along the way….(More)”.

Principles and Policies for “Data Free Flow With Trust”

Curated on Posted on by Stefaan Verhulst

Paper by Nigel Cory, Robert D. Atkinson, and Daniel Castro: “Just as there was a set of institutions, agreements, and principles that emerged out of Bretton Woods in the aftermath of World War II to manage global economic issues, the countries that value the role of an open, competitive, and rules-based global digital economy need to come together to enact new global rules and norms to manage a key driver of today’s global economy: data. Japanese Prime Minister Abe’s new initiative for “data free flow with trust,” combined with Japan’s hosting of the G20 and leading role in e-commerce negotiations at the World Trade Organization (WTO), provides a valuable opportunity for many of the world’s leading digital economies (Australia, the United States, and European Union, among others) to rectify the gradual drift toward a fragmented and less-productive global digital economy. Prime Minister Abe is right in proclaiming, “We have yet to catch up with the new reality, in which data drives everything, where the D.F.F.T., the Data Free Flow with Trust, should top the agenda in our new economy,” and right in his call “to rebuild trust toward the system for international trade. That should be a system that is fair, transparent, and effective in protecting IP and also in such areas as e-commerce.”

The central premise of this effort should be a recognition that data and data-driven innovation are a force for good. Across society, data innovation—the use of data to create value—is creating more productive and innovative economies, transparent and responsive governments, better social outcomes (improved health care, safer and smarter cities, etc.).3But to maximize the innovative and productivity benefits of data, countries that support an open, rules-based global trading system need to agree on core principles and enact common rules. The benefits of a rules-based and competitive global digital economy are at risk as a diverse range of countries in various stages of political and economic development have policy regimes that undermine core processes, especially the flow of data and its associated legal responsibilities; the use of encryption to protect data and digital activities and technologies; and the blocking of data constituting illegal, pirated content….(More)”.

Airbnb and New York City Reach a Truce on Home-Sharing Data

Curated on Posted on by Stefaan Verhulst

Paris Martineau at Wired: “For much of the past decade, Airbnb and New York City have been embroiled in a high-profile feud. Airbnb wants legitimacy in its biggest market. City officials want to limit home-sharing platforms, which they argue exacerbate the city’s housing crisis and pose safety risks by allowing people to transform homes into illegal hotels.

Despite years of lawsuits, countersuits, lobbying campaigns, and failed attempts at legislation, progress on resolving the dispute has been incremental at best. The same could be said for many cities around the nation, as local government officials struggle to come to grips with the increasing popularity of short-term rental platforms like Airbnb, HomeAway, and VRBO in high-tourism areas.

In New York last week, there were two notable breaks in the logjam. On May 14, Airbnb agreed to give city officials partially anonymized host and reservation data for more than 17,000 listings. Two days later, a judge ordered Airbnb to turn over more detailed and nonanonymized information on dozens of hosts and hundreds of guests who have listed or stayed in more than a dozen buildings in Manhattan, Brooklyn, and Queens in the past seven years.

In both cases, the information will be used by investigators with the Mayor’s Office of Special Enforcement to identify hosts and property owners who may have broken the city’s notoriously strict short-term rental laws by converting residences into de facto hotels by listing them on Airbnb.

City officials originally subpoenaed Airbnb for the data—not anonymized—on the more than 17,000 listings in February. Mayor Bill de Blasio called the move an effort to force the company to “come clean about what they’re actually doing in this city.” The agreement outlining the data sharing was signed as a compromise on May 14, according to court records.

In addition to the 17,000 listings identified by the city, Airbnb will also share data on every listing rented through its platform between January 1, 2018, and February 18, 2019, that could have potentially violated New York’s short-term rental laws. The city prohibits rentals of an entire apartment or home for less than 30 days without the owner present in the unit, making many stays traditionally associated with services like Airbnb, HomeAway, and VRBO illegal. Only up to two guests are permitted in the short-term rental of an apartment or room, and they must be given “free and unobstructed access to every room and to each exit within the apartment,” meaning hosts can’t get around the ban on whole-apartment rentals by renting out three separate private rooms at once….(More)”.

Companies That Rely On Census Data Worry Citizenship Question Will Hurt

Curated on Posted on by Stefaan Verhulst

Hansi Lo Wang at NPR: “Some critics of the citizenship question the Trump administration wants to add to the 2020 census are coming from a group that tends to stay away from politically heated issues — business leaders.

From longtime corporations like Levi Strauss & Co. to upstarts like Warby Parker, some companies say that including the question — “Is this person a citizen of the United States?” — could harm not only next year’s national head count, but also their bottom line.

How governments use census data is a common refrain in the lead-up to a constitutionally mandated head count of every person living in the U.S. The new population counts, gathered once a decade, are used to determine how congressional seats and Electoral College votes are distributed among the states. They also guide how hundreds of billions in federal tax dollars are spread around the country to fund public services.

What is often less visible is how the census data undergird decisions made by large and small businesses across the country. The demographic information the census collects — including the age, sex, race, ethnicity and housing status of all U.S. residents — informs business owners about who their existing and future customers are, which new products and services those markets may want and where to build new locations.

Weeks before the Supreme Court heard oral arguments over the citizenship question last month, more than two dozen companies and business groups filed a friend-of-the-court brief against the question. Its potential impact on the accuracy of census data, especially about immigrants and people of color, is drawing concern from both Lyft and Uber, as well as Levi Strauss, Warby Parker and Univision.

“We don’t view this as a political situation at all,” says Christine Pierce, the senior vice president of data science at Nielsen — a major data analytics company in the business world that filed its own brief with the high court. “We see this as one that is around sound research and good science.”…(More)”.

Democracy in Retreat: Freedom in the World 2019

Curated on Posted on by Stefaan Verhulst

Freedom House: “In 2018, Freedom in the World recorded the 13th consecutive year of decline in global freedom. The reversal has spanned a variety of countries in every region, from long-standing democracies like the United States to consolidated authoritarian regimes like China and Russia. The overall losses are still shallow compared with the gains of the late 20th century, but the pattern is consistent and ominous. Democracy is in retreat.

In states that were already authoritarian, earning Not Free designations from Freedom House, governments have increasingly shed the thin façade of democratic practice that they established in previous decades, when international incentives and pressure for reform were stronger. More authoritarian powers are now banning opposition groups or jailing their leaders, dispensing with term limits, and tightening the screws on any independent media that remain. Meanwhile, many countries that democratized after the end of the Cold War have regressed in the face of rampant corruption, antiliberal populist movements, and breakdowns in the rule of law. Most troublingly, even long-standing democracies have been shaken by populist political forces that reject basic principles like the separation of powers and target minorities for discriminatory treatment.

Some light shined through these gathering clouds in 2018. Surprising improvements in individual countries—including Malaysia, Armenia, Ethiopia, Angola, and Ecuador—show that democracy has enduring appeal as a means of holding leaders accountable and creating the conditions for a better life. Even in the countries of Europe and North America where democratic institutions are under pressure, dynamic civic movements for justice and inclusion continue to build on the achievements of their predecessors, expanding the scope of what citizens can and should expect from democracy. The promise of democracy remains real and powerful. Not only defending it but broadening its reach is one of the great causes of our time….(More)”.