The Promise and Perils of Open Medical Data


Sharona Hoffman at the Hastings Center: “Not long ago I visited the Personal Genome Project’s website. The PGP describes its mission as “creating public genome, health, and trait data.” In the “Participant Profiles” section, I found several entries that disclosed the names of individuals along with their date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, medical procedures, and more. Other profiles did not feature names but provided all of the other details. I had no special access to this information. It is available to absolutely anyone with Internet access. The PGP is part of a trend known as “open data.” Many government and private entities have launched initiatives to compile very large data resources (also known as “big data”) and to make them available to the public. President Obama himself has endorsed open data by issuing a May 2013 executive order directing that, to the extent permitted by law, the federal government must release its data to the public in forms that make it easy to locate, access, and use.

Read more:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=7731#ixzz3zOSM2kF0

The rise of the citizen expert


Beth Noveck (The GovLab) at Policy Network: “Does the EU need to be more democratic? It is not surprising that Jürgen Habermas, Europe’s most famous democratic theorist, laments the dearth of mechanisms for “fulfilling the citizens’ political will” in European institutions. The controversial handling of the Greek debt crisis, according to Habermas, was clear evidence of the need for more popular input into otherwise technocratic decision-making. Incremental progress toward participation does not excuse a growing crisis of democratic legitimacy that, he says, is undermining the European project….

For participatory democrats like Habermas, opportunities for deliberative democratic input by citizens is essential to legitimacy. And, to be sure, the absence of such opportunities is no guarantee of more effective outcomes. A Greek referendum in July 2015 scuttled European austerity plans.

But pitting technocracy against citizenship is a false dichotomy resulting from the long-held belief, even among reformers, that only professional public servants or credentialed elites possess the requisite abilities to govern in a complex society. Citizens are spectators who can express opinions but cognitive incapacity, laziness or simply the complexity of modern society limit participation to asking people what they feel by means of elections, opinion polls, or social media.

Although seeing technocracy as the antinomy of citizenship made sense when expertise was difficult to pinpoint, now tools like LinkedIn, which make knowhow more searchable, are making it possible for public institutions to get more help from more diverse sources – including from within the civil service – systematically and could enable more members of the public to participate actively in governing based on what they know and care about. It is high time for institutions to begin to leverage such platforms to match the need for expertise to the demand for it and, in the process, increase engagement becoming more effective and more legitimate.

Such software does more than catalogue credentials. The internet is radically decreasing the costs of identifying diverse forms of expertise so that the person who has taken courses on an online learning platform can showcase those credentials with a searchable digital badge. The person who has answered thousands of questions on a question-and-answer website can demonstrate their practical ability and willingness to help. Ratings by other users further attest to the usefulness of their contributions. In short, it is becoming possible to discover what people know and can do in ever more finely tuned ways and match people to opportunities to participate that speak to their talents….

In an era in which it is commonplace for companies to use technology to segment customers in an effort to promote their products more effectively, the idea of matching might sound obvious. To be sure, it is common practice in business – but in the public sphere, the notion that participation should be tailored to the individual’s abilities and tethered to day-to-day practices of governing, not politicking, is new.  More accurately, it is a revival of Athenian life where citizen competence and expertise were central to economic and military success.

What makes this kind of targeted engagement truly democratic – and citizenship in this vision more active, robust, and meaningful – is that such targeting allows us to multiply the number and frequency of ways to engage productively in a manner consistent with each person’s talents. When we move away from focusing on citizen opinion to discovering citizen expertise, we catalyse participation that is also independent of geographical boundaries….(More)”

Moving from Open Data to Open Knowledge: Announcing the Commerce Data Usability Project


Jeffrey Chen, Tyrone Grandison, and Kristen Honey at the US Department of Commerce: “…in 2016, the DOC is committed to building on this momentum with new and expanded efforts to transform open data into knowledge into action.

DOC Open Data Graphic
Graphic Credit: Radhika Bhatt, Commerce Data Service

DOC has been in the business of open data for a long time. DOC’s National Oceanic and Atmospheric Administration (NOAA) alone collects and disseminates huge amounts of data that fuel the global weather economy—and this information represents just a fraction of the tens of thousands of datasets that DOC collects and manages, on topics ranging from satellite imagery to material standards to demographic surveys.

Unfortunately, far too many DOC datasets are either hard to find, difficult to use, and/or not yet publicly available on Data.gov, the home of U.S. government’s open data. This challenge is not exclusive to DOC; and indeed, under Project Open Data, Federal agencies are working hard on various efforts to make tax-payer funded data more easily discoverable.

CDUP screenshot

One of these efforts is DOC’s Commerce Data Usability Project (CDUP). To unlock the power of data, just making data open isn’t enough. It’s critical to make data easier to find and use—to provide information and tools that make data accessible and actionable for all users. That’s why DOC formed a public-private partnership to create CDUP, a collection of online data tutorials that provide students, developers, and entrepreneurs with the necessary context and code for them to start quickly extracting value from various datasets. Tutorials exist on topics such as:

  • NOAA’s Severe Weather Data Inventory (SWDI), demonstrating how to use hail data to save life and property. The tutorial helps users see that hail events often occur in the summer (late night to early morning), and in midwestern and southern states.
  • Security vulnerability data from the National Institute of Standards and Technology (NIST). The tutorial helps users see that spikes and dips in security incidents consistently occur in the same set of weeks each year.
  • Visible Infrared Imaging Radiometer Suite (VIIRS) data from the National Oceanic and Atmospheric Administration (NOAA). The tutorial helps users understand how to use satellite imagery to estimate populations.
  • American Community Survey (ACS) data from the U.S. Census Bureau. The tutorial helps users understand how nonprofits can identify communities that they want to serve based on demographic traits.

In the coming months, CDUP will continue to expand with a rich, diverse set of additional tutorials….(More)

Crowdsourcing City Government: Using Tournaments to Improve Inspection Accuracy


Edward Glaeser, Andrew Hillis, Scott Kominers and Michael Luca in American Economic Review: Papers and Proceedings:The proliferation of big data makes it possible to better target city services like hygiene inspections, but city governments rarely have the in-house talent needed for developing prediction algorithms. Cities could hire consultants, but a cheaper alternative is to crowdsource competence by making data public and offering a reward for the best algorithm. A simple model suggests that open tournaments dominate consulting contracts when cities can tolerate risk and when there is enough labor with low opportunity costs. We also report on an inexpensive Boston-based restaurant tournament, which yielded algorithms that proved reasonably accurate when tested “out-of-sample” on hygiene inspections….(More)”

 

Designing a toolkit for policy makers


 at UK’s Open Policy Making Blog: “At the end of the last parliament, the Cabinet Office Open Policy Making team launched the Open Policy Making toolkit. This was about giving policy makers the actual tools that will enable them to develop policy that is well informed, creative, tested, and works. The starting point was addressing their needs and giving them what they had told us they needed to develop policy in an ever changing, fast paced and digital world. In a way, it was the culmination of the open policy journey we have been on with departments for the past 2 years. In the first couple of months we saw thousands of unique visits….

Our first version toolkit has been used by 20,000 policy makers. This gave us a huge audience to talk to to make sure that we continue to meet the needs of policy makers and keep the toolkit relevant and useful. Although people have really enjoyed using the toolkit, user testing quickly showed us a few problems…

We knew what we needed to do. Help people understand what Open Policy Making was, how it impacted their policy making, and then to make it as simple as possible for them to know exactly what to do next.

So we came up with some quick ideas on pen and paper and tested them with people. We quickly discovered what not to do. People didn’t want a philosophy— they wanted to know exactly what to do, practical answers, and when to do it. They wanted a sort of design manual for policy….

How do we make user-centered design and open policy making as understood as agile?

We decided to organise the tools around the journey of a policy maker. What might a policy maker need to understand their users? How could they co-design ideas? How could they test policy? We looked at what tools and techniques they could use at the beginning, middle and end of a project, and organised tools accordingly.

We also added sections to remove confusion and hesitation. Our opening section ‘Getting started with Open Policy Making’ provides people with a clear understanding of what open policy making might mean to them, but also some practical considerations. Sections for limited timeframes and budgets help people realise that open policy can be done in almost any situation.

And finally we’ve created a much cleaner and simpler design that lets people show as much or little of the information as they need….

So go and check out the new toolkit and make more open policy yourselves….(More)”

Digital Decisions: Policy Tools in Automated Decision-Making


Ali Lange at CDT: “Digital technology has empowered new voices, made the world more accessible, and increased the speed of almost every decision we make as businesses, communities, and individuals. Much of this convenience is powered by lines of code that rapidly execute instructions based on rules set by programmers (or, in the case of machine learning, generated from statistical correlations in massive datasets)—otherwise known as algorithms. The technology that drives our automated world is sophisticated and obscure, making it difficult to determine how the decisions made by automated systems might fairly or unfairly, positively or negatively, impact individuals. It is also harder to identify where bias may inadvertently arise. Algorithmically driven outcomes are influenced, but not exclusively determined, by technical and legal limitations. The landscape of algorithmic decision-making is also shaped by policy choices in technology companies and by government agencies. Some automated systems create positive outcomes for individuals, and some threaten a fair society. By looking at a few case studies and drawing out the prevailing policy principle, we can draw conclusions about how to critically approach the existing web of automated decision-making. Before considering these specific examples, we will present a summary of the policy debate around data-driven decisions to give context to the examples raised. Then we will analyze three case studies from diverse industries to determine what policy interventions might be applied more broadly to encourage positive outcomes and prevent the risk of discrimination….(More)”

Political Speech Generation


Valentin Kassarnig at arXiv: “In this report we present a system that can generate political speeches for a desired political party. Furthermore, the system allows to specify whether a speech should hold a supportive or opposing opinion. The system relies on a combination of several state-of-the-art NLP methods which are discussed in this report. These include n-grams, Justeson & Katz POS tag filter, recurrent neural networks, and latent Dirichlet allocation. Sequences of words are generated based on probabilities obtained from two underlying models: A language model takes care of the grammatical correctness while a topic model aims for textual consistency. Both models were trained on the Convote dataset which contains transcripts from US congressional floor debates. Furthermore, we present a manual and an automated approach to evaluate the quality of generated speeches. In an experimental evaluation generated speeches have shown very high quality in terms of grammatical correctness and sentence transitions….(More)”

Innovating and changing the policy-cycle: Policy-makers be prepared!


Marijn Janssen and Natalie Helbig in Government Information Quarterly: “Many policy-makers are struggling to understand participatory governance in the midst of technological changes. Advances in information and communication technologies (ICTs) continue to have an impact on the ways that policy-makers and citizens engage with each other throughout the policy-making process. A set of developments in the areas of opening government data, advanced analytics, visualization, simulation, and gaming, and ubiquitous citizen access using mobile and personalized applications is shaping the interactions between policy-makers and citizens. Yet the impact of these developments on the policy-makers is unclear. The changing roles and need for new capabilities required from the government are analyzed in this paper using two case studies. Salient new roles for policy-makers are outlined focused on orchestrating the policy-making process. Research directions are identified including understand the behavior of users, aggregating and analyzing content from scattered resources, and the effective use of the new tools. Understanding new policy-makers roles will help to bridge the gap between the potential of tools and technologies and the organizational realities and political contexts. We argue that many examples are available that enable learning from others, in both directions, developed countries experiences are useful for developing countries and experiences from the latter are valuable for the former countries…(More)”

The Smart City and its Citizens


Paper by Carlo Francesco Capra on “Governance and Citizen Participation in Amsterdam Smart City…Smart cities are associated almost exclusively with modern technology and infrastructure. However, smart cities have the possibility to enhance the involvement and contribution of citizens to urban development. This work explores the role of governance as one of the factors influencing the participation of citizens in smart cities projects. Governance characteristics play a major role in explaining different typologies of citizen participation. Through a focus on Amsterdam Smart City program as a specific case study, this research examines the characteristics of governance that are present in the overall program and within a selected sample of projects, and how they relate to different typologies of citizen participation. The analysis and comprehension of governance characteristics plays a crucial role both for a better understanding and management of citizen participation, especially in complex settings where multiple actors are interacting….(More)”

The Open (Data) Market


Sean McDonald at Medium: “Open licensing privatizes technology and data usability. How does that effect equality and accessibility?…The open licensing movement(open data, open source software, etc.) predicates its value on increasing accessibility and transparency by removing legal and ownership restrictions on use. The groups that advocate for open data and open sourcecode, especially in government and publicly subsidized industries, often come from transparency, accountability, and freedom of information backgrounds. These efforts, however, significantly underestimate the costs of refining, maintaining, targeting, defining a value proposition, marketing, and presenting both data and products in ways that are effective and useful for the average person. Recent research suggests the primary beneficiaries of civic technologies — those specifically built on government data or services — are privileged populations. The World Banks recent World Development Report goes further to point out that public digitization can be a driver of inequality.

The dynamic of self-replicating privilege in both technology and openmarkets is not a new phenomenon. Social science research refers to it as the Matthew Effect, which says that in open or unregulated spaces, theprivileged tend to become more privileged, while the poor become poorer.While there’s no question the advent of technology brings massive potential,it is already creating significant access and achievement divides. Accordingto the Federal Communication Commission’s annual Broadband Progressreport in 2015, 42% of students in the U.S. struggle to do their homeworkbecause of web access — and 39% of rural communities don’t even have abroadband option. Internet access skews toward urban, wealthycommunities, with income, geography, and demographics all playing a rolein adoption. Even further, research suggests that the rich and poor use technology differently. This runs counter to narrative of Interneteventualism, which insist that it’s simply a (small) matter of time beforethese access (and skills) gaps close. Evidence suggests that for upper andmiddle income groups access is almost universal, but the gaps for lowincome groups are growing…(More)”