Is Crowdsourcing Patient-Reported Outcomes the Future of Evidence-Based Medicine?


Paper by Mor Peleg, Tiffany I. Leung, Manisha Desai and Michel Dumontier: “Evidence is lacking for patient-reported effectiveness of treatments for most medical conditions and specifically for lower back pain. In this paper, we examined a consumer-based social network that collects patients’ treatment ratings as a potential source of evidence. Acknowledging the potential biases of this data set, we used propensity score matching and generalized linear regression to account for confounding variables. To evaluate validity, we compared results obtained by analyzing the patient reported data to results of evidence-based studies. Overall, there was agreement on the relationship between back pain and being obese. In addition, there was agreement about which treatments were effective or had no benefit. The patients’ ratings also point to new evidence that postural modification treatment is effective and that surgery is harmful to a large proportion of patients….(More)”.

Powerlessness and the Politics of Blame


The Jefferson Lecture in the Humanities by Martha C. Nussbaum: “… I believe the Greeks and Romans are right: anger is a poison to democratic politics, and it is all the worse when fueled by a lurking fear and a sense of helplessness. As a philosopher I have been working on these ideas for some time, first in a 2016 book called Anger and Forgiveness, and now in a book in progress called The Monarchy of Fear, investigating the relationship between anger and fear. In my work, I draw not only on the Greeks and Romans, but also on some recent figures, as I shall tonight. I conclude that we should resist anger in ourselves and inhibit its role in our political culture.

That idea, however, is radical and evokes strong opposition. For anger, with all its ugliness, is a popular emotion. Many people think that it is impossible to care for justice without anger at injustice, and that anger should be encouraged as part of a transformative process. Many also believe that it is impossible for individuals to stand up for their own self-respect without anger, that someone who reacts to wrongs and insults without anger is spineless and downtrodden. Nor are these ideas confined to the sphere of personal relations. The most popular position in the sphere of criminal justice today is retributivism, the view that the law ought to punish aggressors in a manner that embodies the spirit of justified anger. And it is also very widely believed that successful challenges against great injustice need anger to make progress.

Still, we may persist in our Aeschylean skepticism, remembering that recent years have seen three noble and successful freedom movements conducted in a spirit of non-anger: those of Mohandas Gandhi, Martin Luther King, Jr., and Nelson Mandela—surely people who stood up for their self-respect and that of others, and who did not acquiesce in injustice.

I’ll now argue that a philosophical analysis of anger can help us support these philosophies of non-anger, showing why anger is fatally flawed from a normative viewpoint—sometimes incoherent, sometimes based on bad values, and especially poisonous when people use it to deflect attention from real problems that they feel powerless to solve.  Anger pollutes democratic politics and is of dubious value in both life and the law. I’ll present my general view, and then show its relevance to thinking well about the struggle for political justice, taking our own ongoing struggle for racial justice as my example. And I’ll end by showing why these arguments make it urgent for us to learn from literature and philosophy, keeping the humanities strong in our society….(More)”

Public Data Is More Important Than Ever–And Now It’s Easier To Find


Meg Miller at Co.Design: “Public data, in theory, is meant to be accessible to everyone. But in practice, even finding it can be near impossible, to say nothing of figuring out what to do with it once you do. Government data websites are often clunky and outdated, and some data is still trapped on physical media–like CDs or individual hard drives.

Tens of thousands of these CDs and hard drives, full of data on topics from Arkansas amusement parks to fire incident reporting, have arrived at the doorstep of the New York-based start-up Enigma over the past four years. The company has obtained thousands upon thousands more datasets by way of Freedom of Information Act (FOIA) requests. Enigma specializes in open data: gathering it, curating it, and analyzing it for insights into a client’s industry, for example, or for public service initiatives.

Enigma also shares its 100,000 datasets with the world through an online platform called Public—the broadest collection of public data that is open and searchable by everyone. Public has been around since Enigma launched in 2013, but today the company is introducing a redesigned version of the site that’s fresher and more user-friendly, with easier navigation and additional features that allow users to drill further down into the data.

But while the first iteration of Public was mostly concerned with making Enigma’s enormous trove of data—which it was already gathering and reformating for client work—accessible to the public, the new site focuses more on linking that data in new ways. For journalists, researchers, and data scientists, the tool will offer more sophisticated ways of making sense of the data that they have access to through Enigma….

…the new homepage also curates featured datasets and collections to enforce a sense of discoverability. For example, an Enigma-curated collection of U.S. sanctions data from the U.S. Treasury Department’s Office of Foreign Assets Control (OFAC) shows data on the restrictions on entities or individuals that American companies can and can’t do business with in an effort to achieve specific national security or foreign policy objectives. A new round of sanctions against Russia have been in the news lately as an effort by President Trump to loosen restrictions on blacklisted businesses and individuals in Russia was overruled by the Senate last week. Enigma’s curated data selection on U.S. sanctions could help journalists contextualize recent events with data that shows changes in sanctions lists over time by presidential administration, for instance–or they could compare the U.S. sanctions list to the European Union’s….(More).

Blockchains, personal data and the challenge of governance


Theo Bass at NESTA: “…There are a number of dominant internet platforms (Google, Facebook, Amazon, etc.) that hoard, analyse and sell information about their users in the name of a more personalised and efficient service. This has become a problem.

People feel they are losing control over how their data is used and reused on the web. 500 million adblocker downloads is a symptom of a market which isn’t working well for people. As Irene Ng mentions in a recent guest blog on the Nesta website, the secondary data market is thriving (online advertising is a major player), as companies benefit from the opacity and lack of transparency about where profit is made from personal data.

It’s said that blockchain’s key characteristics could provide a foundational protocol for a fairer digital identity system on the web. Beyond its application as digital currency, blockchain could provide a new set of technical standards for transparency, openness, and user consent, on top of which a whole new generation of services might be built.

While the aim is ambitious, a handful of projects are rising to the challenge.

Blockstack is creating a global system of digital IDs, which are written into the bitcoin blockchain. Nobody can touch them other than the owner of that ID. Blockstack are building a new generation of applications on top of this infrastructure which promises to provide “a new decentralized internet where users own their data and apps run locally”.

Sovrin attempts to provide users with “self-sovereign identity”. The argument is that “centralized” systems for storing personal data make it a “treasure chest for attackers”. Sovrin argues that users should more easily be able to have “ownership” over their data, and the exchange of data should be made possible through a decentralised, tamper-proof ledger of transactions between users.

Our own DECODE project is piloting a set of collaboratively owned, local sharing economy platforms in Barcelona and Amsterdam. The blockchain aims to provide a public record of entitlements over where people’s data is stored, who can access it and for what purpose (with some additional help from new techniques in zero-knowledge cryptography to preserve people’s privacy).

There’s no doubt this is an exciting field of innovation. But the debate is characterised by a lot of hype. The following sections therefore discuss some of the challenges thrown up when we start thinking about implementations beyond bitcoin.

Blockchains and the challenge of governance

As mentioned above, bitcoin is a “bearer asset”. This is a necessary feature of decentralisation — all users maintain sole ownership over the digital money they hold on the network. If users get hacked (digital wallets sometimes do), or if a password gets lost, the money is irretrievable.

While the example of losing a password might seem trivial, it highlights some difficult questions for proponents of blockchain’s wider uses. What happens if there’s a dispute over an online transaction, but no intermediary to settle it? What happens if a someone’s digital assets or their digital identity is breached and sensitive data falls into the wrong hands? It might be necessary to assign responsibility to a governing actor to help resolve the issue, but of course this would require the introduction of a trusted middleman.

Bitcoin doesn’t try to answer these questions; its anonymous creators deliberately tried to avoid implementing a clear model of governance over the network, probably because they knew that bitcoin would be used by people as a method for subverting the law. Bitcoin still sees a lot of use in gray economies, including for the sale of drugs and gambling.

But if blockchains are set to enter the mainstream, providing for businesses, governments and nonprofits, then they won’t be able to function irrespective of the law. They will need to find use-cases that can operate alongside legal frameworks and jurisdictional boundaries. They will need to demonstrate regulatory compliance, create systems of rules and provide accountability when things go awry. This cannot just be solved through increasingly sophisticated coding.

All of this raises a potential paradox recently elaborated in a post by Vili Lehdonvirta of the Oxford Internet Institute: is it possible to successfully govern blockchains without undermining their entire purpose?….

If blockchain advocates only work towards purely technical solutions and ignore real-world challenges of trying to implement decentralisation, then we’ll only ever see flawed implementations of the technology. This is already happening in the form of centrally administered, proprietary or ‘half-baked’ blockchains, which don’t offer much more value than traditional databases….(More)”.

The Age of Customer.gov: Can the Tech that Drives 311 Help Government Deliver an Amazon-like Experience?


Tod Newcombe  at GovTech: “The Digital Communities Special … June 2017 report explores the idea that the tech that drives 311 can help government deliver an Amazon-like experience.

PART 1: 311: FROM A HOTLINE TO A PLATFORM FOR CITIZEN ENGAGEMENT

PART 2: CLOUD 311 POPULARITY GROWS AS CITIES OF ALL SIZES MOVE TO REMOTELY HOSTED CRM

PART 3: THE FUTURE OF CRM AND CUSTOMER SERVICE: LOOK TO BOSTON

PART 4: CRM USE IS GAINING TRACTION IN LOCAL GOVERNMENT — HERE ARE THE NUMBERS TO PROVE IT…(More)”.

Regulation of Big Data: Perspectives on Strategy, Policy, Law and Privacy


Paper by Pompeu CasanovasLouis de KokerDanuta Mendelson and David Watts: “…presents four complementary perspectives stemming from governance, law, ethics, and computer science. Big, Linked, and Open Data constitute complex phenomena whose economic and political dimensions require a plurality of instruments to enhance and protect citizens’ rights. Some conclusions are offered in the end to foster a more general discussion.

This article contends that the effective regulation of Big Data requires a combination of legal tools and other instruments of a semantic and algorithmic nature. It commences with a brief discussion of the concept of Big Data and views expressed by Australian and UK participants in a study of Big Data use in a law enforcement and national security perspective. The second part of the article highlights the UN’s Special Rapporteur on the Right to Privacy interest in the themes and the focus of their new program on Big Data. UK law reforms regarding authorisation of warrants for the exercise of bulk data powers is discussed in the third part. Reflecting on these developments, the paper closes with an exploration of the complex relationship between law and Big Data and the implications for regulation and governance of Big Data….(More)”.

Computational Propaganda Worldwide


Executive Summary: “The Computational Propaganda Research Project at the Oxford Internet Institute, University of Oxford, has researched the use of social media for public opinion manipulation. The team involved 12 researchers across nine countries who, altogether, interviewed 65 experts, analyzed tens of millions posts on seven different social media platforms during scores of elections, political crises, and national security incidents. Each case study analyzes qualitative, quantitative, and computational evidence collected between 2015 and 2017 from Brazil, Canada, China, Germany, Poland, Taiwan, Russia, Ukraine, and the United States.

Computational propaganda is the use of algorithms, automation, and human curation to purposefully distribute misleading information over social media networks. We find several distinct global trends in computational propaganda. •

  • Social media are significant platforms for political engagement and crucial channels for disseminating news content. Social media platforms are the primary media over which young people develop their political identities.
    • In some countries this is because some companies, such as Facebook, are effectively monopoly platforms for public life. o In several democracies the majority of voters use social media to share political news and information, especially during elections.
    • In countries where only small proportions of the public have regular access to social media, such platforms are still fundamental infrastructure for political conversation among the journalists, civil society leaders, and political elites.
  • Social media are actively used as a tool for public opinion manipulation, though in diverse ways and on different topics. o In authoritarian countries, social media platforms are a primary means of social control. This is especially true during political and security crises. o In democracies, social media are actively used for computational propaganda either through broad efforts at opinion manipulation or targeted experiments on particular segments of the public.
  • In every country we found civil society groups trying, but struggling, to protect themselves and respond to active misinformation campaigns….(More)”.

Open Data’s Effect on Food Security


Jeremy de Beer, Jeremiah Baarbé, and Sarah Thuswaldner at Open AIR: “Agricultural data is a vital resource in the effort to address food insecurity. This data is used across the food-production chain. For example, farmers rely on agricultural data to decide when to plant crops, scientists use data to conduct research on pests and design disease resistant plants, and governments make policy based on land use data. As the value of agricultural data is understood, there is a growing call for governments and firms to open their agricultural data.

Open data is data that anyone can access, use, or share. Open agricultural data has the potential to address food insecurity by making it easier for farmers and other stakeholders to access and use the data they need. Open data also builds trust and fosters collaboration among stakeholders that can lead to new discoveries to address the problems of feeding a growing population.

 

A network of partnerships is growing around agricultural data research. The Open African Innovation Research (Open AIR) network is researching open agricultural data in partnership with the Plant Phenotyping and Imaging Research Centre (P2IRC) and the Global Institute for Food Security (GIFS). This research builds on a partnership with the Global Open Data for Agriculture and Nutrition (GODAN) and they are exploring partnerships with Open Data for Development (OD4D) and other open data organizations.

…published two works on open agricultural data. Published in partnership with GODAN, “Ownership of Open Data” describes how intellectual property law defines ownership rights in data. Firms that collect data own the rights to data, which is a major factor in the power dynamics of open data. In July, Jeremiah Baarbé and Jeremy de Beer will be presenting “A Data Commons for Food Security” …The paper proposes a licensing model that allows farmers to benefit from the datasets to which they contribute. The license supports SME data collectors, who need sophisticated legal tools; contributors, who need engagement, privacy, control, and benefit sharing; and consumers who need open access….(More)“.

Teaching machines to understand – and summarize – text


 and  in The Conversation: “We humans are swamped with text. It’s not just news and other timely information: Regular people are drowning in legal documents. The problem is so bad we mostly ignore it. Every time a person uses a store’s loyalty rewards card or connects to an online service, his or her activities are governed by the equivalent of hundreds of pages of legalese. Most people pay no attention to these massive documents, often labeled “terms of service,” “user agreement” or “privacy policy.”

These are just part of a much wider societal problem of information overload. There is so much data stored – exabytes of it, as much stored as has ever been spoken by people in all of human history – that it’s humanly impossible to read and interpret everything. Often, we narrow down our pool of information by choosing particular topics or issues to pay attention to. But it’s important to actually know the meaning and contents of the legal documents that govern how our data is stored and who can see it.

As computer science researchers, we are working on ways artificial intelligence algorithms could digest these massive texts and extract their meaning, presenting it in terms regular people can understand….

Examining privacy policies

A modern internet-enabled life today more or less requires trusting for-profit companies with private information (like physical and email addresses, credit card numbers and bank account details) and personal data (photos and videos, email messages and location information).

These companies’ cloud-based systems typically keep multiple copies of users’ data as part of backup plans to prevent service outages. That means there are more potential targets – each data center must be securely protected both physically and electronically. Of course, internet companies recognize customers’ concerns and employ security teams to protect users’ data. But the specific and detailed legal obligations they undertake to do that are found in their impenetrable privacy policies. No regular human – and perhaps even no single attorney – can truly understand them.

In our study, we ask computers to summarize the terms and conditions regular users say they agree to when they click “Accept” or “Agree” buttons for online services. We downloaded the publicly available privacy policies of various internet companies, including Amazon AWS, Facebook, Google, HP, Oracle, PayPal, Salesforce, Snapchat, Twitter and WhatsApp….

Our software examines the text and uses information extraction techniques to identify key information specifying the legal rights, obligations and prohibitions identified in the document. It also uses linguistic analysis to identify whether each rule applies to the service provider, the user or a third-party entity, such as advertisers and marketing companies. Then it presents that information in clear, direct, human-readable statements….(More)”

Artificial intelligence can predict which congressional bills will pass


Other algorithms have predicted whether a bill will survive a congressional committee, or whether the Senate or House of Representatives will vote to approve it—all with varying degrees of success. But John Nay, a computer scientist and co-founder of Skopos Labs, a Nashville-based AI company focused on studying policymaking, wanted to take things one step further. He wanted to predict whether an introduced bill would make it all the way through both chambers—and precisely what its chances were.

Nay started with data on the 103rd Congress (1993–1995) through the 113th Congress (2013–2015), downloaded from a legislation-tracking website call GovTrack. This included the full text of the bills, plus a set of variables, including the number of co-sponsors, the month the bill was introduced, and whether the sponsor was in the majority party of their chamber. Using data on Congresses 103 through 106, he trained machine-learning algorithms—programs that find patterns on their own—to associate bills’ text and contextual variables with their outcomes. He then predicted how each bill would do in the 107th Congress. Then, he trained his algorithms on Congresses 103 through 107 to predict the 108th Congress, and so on.

Nay’s most complex machine-learning algorithm combined several parts. The first part analyzed the language in the bill. It interpreted the meaning of words by how they were embedded in surrounding words. For example, it might see the phrase “obtain a loan for education” and assume “loan” has something to do with “obtain” and “education.” A word’s meaning was then represented as a string of numbers describing its relation to other words. The algorithm combined these numbers to assign each sentence a meaning. Then, it found links between the meanings of sentences and the success of bills that contained them. Three other algorithms found connections between contextual data and bill success. Finally, an umbrella algorithm used the results from those four algorithms to predict what would happen…. his program scored about 65% better than simply guessing that a bill wouldn’t pass, Nay reported last month in PLOS ONE…(More).