How Data Can Help in the Fight Against the Opioid Epidemic in the United States

Curated on Posted on by Stefaan Verhulst

Report by Joshua New: “The United States is in the midst of an opioid epidemic 20 years in the making….

One of the most pernicious obstacles in the fight against the opioid epidemic is that, until relatively recently, it was difficult to measure the epidemic in any comprehensive capacity beyond such high-level statistics. A lack of granular data and authorities’ inability to use data to inform response efforts allowed the epidemic to grow to devastating proportions. The maxim “you can’t manage what you can’t measure” has never been so relevant, and this failure to effectively leverage data has undoubtedly cost many lives and caused severe social and economic damage to communities ravaged by opioid addiction, with authorities limited in their ability to fight back.

Many factors contributed to the opioid epidemic, including healthcare providers not fully understanding the potential ramifications of prescribing opioids, socioeconomic conditions that make addiction more likely, and drug distributors turning a blind eye to likely criminal behavior, such as pharmacy workers illegally selling opioids on the black market. Data will not be able to solve these problems, but it can make public health officials and other stakeholders more effective at responding to them. Fortunately, recent efforts to better leverage data in the fight against the opioid epidemic have demonstrated the potential for data to be an invaluable and effective tool to inform decision-making and guide response efforts. Policymakers should aggressively pursue more data-driven strategies to combat the opioid epidemic while learning from past mistakes that helped contribute to the epidemic to prevent similar situations in the future.

The scope of this paper is limited to opportunities to better leverage data to help address problems primarily related to the abuse of prescription opioids, rather than the abuse of illicitly manufactured opioids such as heroin and fentanyl. While these issues may overlap, such as when a person develops an opioid use disorder from prescribed opioids and then seeks heroin when they are unable to obtain more from their doctor, the opportunities to address the abuse of prescription opioids are more clear-cut….(More)”.

Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations

Curated on Posted on by Stefaan Verhulst

Paper by Mark A. Rothstein et al: “Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance….(More)”.

The Right to Be Seen

Curated on Posted on by Stefaan Verhulst

Anne-Marie Slaughter and Yuliya Panfil at Project Syndicate: “While much of the developed world is properly worried about myriad privacy outrages at the hands of Big Tech and demanding – and securing – for individuals a “right to be forgotten,” many around the world are posing a very different question: What about the right to be seen?

Just ask the billion people who are locked out of services we take for granted – things like a bank account, a deed to a house, or even a mobile phone account – because they lack identity documents and thus can’t prove who they are. They are effectively invisible as a result of poor data.

The ability to exercise many of our most basic rights and privileges – such as the right to vote, drive, own property, and travel internationally – is determined by large administrative agencies that rely on standardized information to determine who is eligible for what. For example, to obtain a passport it is typically necessary to present a birth certificate. But what if you do not have a birth certificate? To open a bank account requires proof of address. But what if your house doesn’t have an address?

The inability to provide such basic information is a barrier to stability, prosperity, and opportunity. Invisible people are locked out of the formal economy, unable to vote, travel, or access medical and education benefits. It’s not that they are undeserving or unqualified, it’s that they are data poor.

In this context, the rich digital record provided by our smartphones and other sensors could become a powerful tool for good, so long as the risks are acknowledged. These gadgets, which have become central to our social and economic lives, leave a data trail that for many of us is the raw material that fuels what Harvard’s Shoshana Zuboff calls “surveillance capitalism.” Our Google location history shows exactly where we live and work. Our email activity reveals our social networks. Even the way we hold our smartphone can give away early signs of Parkinson’s.

But what if citizens could harness the power of these data for themselves, to become visible to administrative gatekeepers and access the rights and privileges to which they are entitled? Their virtual trail could then be converted into proof of physical facts.

That is beginning to happen. In India, slum dwellers are using smartphone location data to put themselves on city maps for the first time and register for addresses that they can then use to receive mail and register for government IDs. In Tanzania, citizens are using their mobile payment histories to build their credit scores and access more traditional financial services. And in Europe and the United States, Uber drivers are fighting for their rideshare data to advocate for employment benefits….(More)”.

“Mind the Five”: Guidelines for Data Privacy and Security in Humanitarian Work With Undocumented Migrants and Other Vulnerable Populations

Curated on Posted on by Stefaan Verhulst

Paper by Sara Vannini, Ricardo Gomez and Bryce Clayton Newell: “The forced displacement and transnational migration of millions of people around the world is a growing phenomenon that has been met with increased surveillance and datafication by a variety of actors. Small humanitarian organizations that help irregular migrants in the United States frequently do not have the resources or expertise to fully address the implications of collecting, storing, and using data about the vulnerable populations they serve. As a result, there is a risk that their work could exacerbate the vulnerabilities of the very same migrants they are trying to help. In this study, we propose a conceptual framework for protecting privacy in the context of humanitarian information activities (HIA) with irregular migrants. We draw from a review of the academic literature as well as interviews with individuals affiliated with several US‐based humanitarian organizations, higher education institutions, and nonprofit organizations that provide support to undocumented migrants. We discuss 3 primary issues: (i) HIA present both technological and human risks; (ii) the expectation of privacy self‐management by vulnerable populations is problematic; and (iii) there is a need for robust, actionable, privacy‐related guidelines for HIA. We suggest 5 recommendations to strengthen the privacy protection offered to undocumented migrants and other vulnerable populations….(More)”.

A Republic of Equals: A Manifesto for a Just Society

Curated on Posted on by Stefaan Verhulst

Book by Jonathan Rothwell: “Political equality is the most basic tenet of democracy. Yet in America and other democratic nations, those with political power have special access to markets and public services. A Republic of Equals traces the massive income inequality observed in the United States and other rich democracies to politicized markets and avoidable gaps in opportunity—and explains why they are the root cause of what ails democracy today.

In this provocative book, economist Jonathan Rothwell draws on the latest empirical evidence from across the social sciences to demonstrate how rich democracies have allowed racial politics and the interests of those at the top to subordinate justice. He looks at the rise of nationalism in Europe and the United States, revealing how this trend overlaps with racial prejudice and is related to mounting frustration with a political status quo that thrives on income inequality and inefficient markets. But economic differences are by no means inevitable. Differences in group status by race and ethnicity are dynamic and have reversed themselves across continents and within countries. Inequalities persist between races in the United States because Black Americans are denied equal access to markets and public services. Meanwhile, elite professional associations carve out privileged market status for their members, leading to compensation in excess of their skills.

A Republic of Equals provides a bold new perspective on how to foster greater political and social equality, while moving societies closer to what a true republic should be….(More)”.

An Open Letter to Law School Deans about Privacy Law Education in Law Schools

Curated on Posted on by Stefaan Verhulst

Daniel Solove: “Recently a group of legal academics and practitioners in the field of privacy law sent a letter to the deans of all U.S. law schools about privacy law education in law schools.  My own brief intro about this endeavor is here in italics, followed by the letter. The signatories to the letter have signed onto the letter, not this italicized intro.

Although the field of privacy law grown dramatically in past two decades, education in law schools about privacy law has significantly lagged behind.  Most U.S. law schools lack a course on privacy law. Of those that have courses, many are small seminars, often taught by adjuncts.  Of the law schools that do have a privacy course, most often just have one course. Most schools lack a full-time faculty member who focuses substantially on privacy law.

This state of affairs is a great detriment to students. I am constantly approached by students and graduates from law schools across the country who are wondering how they can learn about privacy law and enter the field. Many express great disappointment at the lack of any courses, faculty, or activities at their schools.

After years of hoping that the legal academy would wake up and respond, I came to the realization that this wasn’t going to happen on its own. The following letter [click here for the PDF version] aims to make deans aware of the privacy law field. I hope that the letter is met with action….(More)”.

Mayor de Blasio Signs Executive Order to Establish Algorithms Management and Policy Officer

Curated on Posted on by Stefaan Verhulst

Press release: “Mayor Bill de Blasio today signed an Executive Order to establish an Algorithms Management and Policy Officer within the Mayor’s Office of Operations. The Officer will serve as a centralized resource on algorithm policy and develop guidelines and best practices to assist City agencies in their use of algorithms to make decisions. The new Officer will ensure relevant algorithms used by the City to deliver services promote equity, fairness and accountability. The creation of the position follows review of the recommendations from the Automated Decision Systems (ADS) Task Force Report required by Local Law 49 of 2018, published here.

“Fairness and equity are central to improving the lives of New Yorkers,” said Mayor Bill de Blasio.“With every new technology comes added responsibility, and I look forward to welcoming an Algorithms Management and Policy Officer to my team to ensure the tools we use to make decisions are fair and transparent.”…

The Algorithms Management and Policy Officer will develop guidelines and best practices to assist City agencies in their use of tools or systems that rely on algorithms and related technologies to support decision-making. As part of that effort, the Officer and their personnel support will develop processes for agency reporting and provide resources that will help the public learn more about how New York City government uses algorithms to make decisions and deliver services….(More)”.

The Trace

Curated on Posted on by Stefaan Verhulst

About: “The Trace is an independent, nonpartisan, nonprofit newsroom dedicated to shining a light on America’s gun violence crisis….

Every year in our country, a firearm is used in nearly 500,000 crimes, resulting in the deaths and injuries of more than 110,000 people. Shootings devastate families and communities and drain billions of dollars from local, state, and federal governments. Meanwhile, the problem of gun violence has been compounded by another: the shortage of knowledge about the issue…

Data and records are shielded from public view—or don’t exist. Gun-lobby backed restrictions on federal gun violence research deprive policymakers and public health experts of potentially life-saving facts. Other laws limit the information that law enforcement agencies can share on illegal guns and curb litigation that could allow scrutiny of industry practices….

We make the problem clear. In partnership with Slate, we built an eye-opening, interactive map plotting the locations of nearly 40,000 incidents of gun violence nationwide. The feature received millions of pageviews and generated extensive local coverage and social media conversation. “So many shootings and deaths, so close to my home,” wrote one reader. “And I hadn’t even heard about most of them.”…(More)”.

Thinking About the Commons

Curated on Posted on by Stefaan Verhulst

Carol M. Rose at the International Journal of the Commons: “This article, originally a speech in the conference, Leçons de Droit Comparé sur les Communs, Sciences-Po, Paris, explores current developments in theoretical thinking about the commons. It keys off contemporary reconsiderations of Garret Hardin’s “Tragedy of the Commons” and Elinor Ostrom’s response to Hardin in Governing the Commons and later work.

Ostrom was among the best-known critics of Hardin’s idea of a “tragedy,” but Ostrom’s own work has also raised some questions in more recent commons literature. One key question is the very uncertain relationship between community-based resource control and democratic rights. A second key question revolves around the understanding of commons on the one hand as limited common regimes, central to Ostrom’s work, or as open access, as espoused by more recent advocates of widespread access to information and communications networks….(More)”.

Americans’ views about privacy, surveillance and data-sharing

Curated on Posted on by Stefaan Verhulst

Pew Research Center: “In key ways, today’s digitally networked society runs on quid pro quos: People exchange details about themselves and their activities for services and products on the web or apps. Many are willing to accept the deals they are offered in return for sharing insight about their purchases, behaviors and social lives. At times, their personal information is collected by government on the grounds that there are benefits to public safety and security.

A majority of Americans are concerned about this collection and use of their data, according to a new report from Pew Research Center….

Americans vary in their attitudes toward data-sharing in the pursuit of public good. Though many Americans don’t think they benefit much from the collection of their data, and they find that the potential risks of this practice outweigh the benefits, there are some scenarios in which the public is more likely to accept the idea of data-sharing. In line with findings in a 2015 Center survey showing that some Americans are comfortable with trade-offs in sharing data, about half of U.S. adults (49%) say it is acceptable for the government to collect data about all Americans in order to assess potential terrorist threats. That compares with 31% who feel it is unacceptable to collect data about all Americans for that purpose. By contrast, just one-quarter say it is acceptable for smart speaker makers to share users’ audio recordings with law enforcement to help with criminal investigations, versus 49% who find that unacceptable….(More)”.