'Hackathons' Aim to Solve Health Care's Ills

Curated on Posted on by Stefaan Verhulst

Amy Dockser Marcus in the Wall Street Journal: “Hackathons, the high-octane, all-night problem-solving sessions popularized by the software-coding community, are making their way into the more traditional world of health care. At Massachusetts Institute of Technology, a recent event called Hacking Medicine’s Grand Hackfest attracted more than 450 people to work for one weekend on possible solutions to problems involving diabetes, rare diseases, global health and information technology used at hospitals.
Health institutions such as New York-Presbyterian Hospital and Brigham and Women’s Hospital in Boston have held hackathons. MIT, meantime, has co-sponsored health hackathons in India, Spain and Uganda.
Hackathons of all kinds are increasingly popular. Intel Corp.  recently bought a group that organizes them. Companies hoping to spark creative thinking sponsor them. And student-run hackathons have turned into intercollegiate competitions.
But in health care, where change typically comes much more slowly than in Silicon Valley, they represent a cultural shift. To solve a problem, scientists and doctors can spend years painstakingly running experiments, gathering data, applying for grants and publishing results. So the idea of an event where people give two-minute pitches describing a problem, then join a team of strangers to come up with a solution in the course of one weekend is radical.
“We are not trying to replace the medical culture with Facebook culture,” said Elliot Cohen, who wore a hoodie over a button-down dress shirt at the MIT event in March and helped start MIT Hacking Medicine while at business school. “But we want to try to blend them more.”
Mr. Cohen co-founded and is chief technology officer at PillPack, a pharmacy that sends customers personalized packages of their medications, a company that started at a hackathon.
At MIT’s health-hack, physicians, researchers, students and a smattering of people wearing Google Glass sprawled on the floor of MIT’s Media Lab and at tables with a view of the Boston skyline. At one table, a group of college students, laptops plastered with stickers, pulled juice boxes and snacks out of backpacks, trash piling up next to them as they feverishly wrote code.
Nupur Garg, an emergency-room physician and one of the eventual winners, finished her hospital shift at 2 a.m. Saturday in New York, drove to Boston and arrived at MIT in time to pitch the need for a way to capture images of patients’ ears and throats that can be shared with specialists to help make diagnoses. She and her team immediately started working on a prototype for the device, testing early versions on anyone who stopped by their table.
Dr. Garg and teammate Nancy Liang, who runs a company that makes Web apps for 3-D printers, caught a few hours of sleep in a dorm room Saturday night. They came up with the idea for their product’s name—MedSnap—later that night while watching students use cellphone cameras to send SnapChats to one another. “There was no time to conduct surveys on what was the best name,” said Ms. Liang. “Many ideas happen after midnight.”
Winning teams in each category won $1,000, as well as access to the hackathons sponsors for advice and pilot projects.
Yet even supporters say hackathons can’t solve medicine’s challenges overnight. Harlan Krumholz, a professor at Yale School of Medicine who ran a many-months trial that found telemonitoring didn’t reduce hospitalizations or deaths of cardiology patients, said he supports the problem-solving ethos of hackathons. But he added that “improvements require a long-term commitment, not just a weekend.”
Ned McCague, a data scientist at Blue Cross Blue Shield of Massachusetts, served as a mentor at the hackathon. He said he wasn’t representing his employer, but he used his professional experiences to push groups to think about the potential customer. “They have a good idea and are excited about it, but they haven’t thought about who is paying for it,” he said.
Zen Chu, a senior lecturer in health-care innovation and entrepreneur-in-residence at MIT, and one of the founders of Hacking Medicine, said more than a dozen startups conceived since the first hackathon, in 2011, are still in operation. Some received venture-capital funding.
The upsides of hackathons were made clear to Sharon Moalem, a physician who studies rare diseases. He had spent years developing a mobile app that can take pictures of faces to help diagnose rare genetic conditions, but was stumped on how to give the images a standard size scale to make comparisons. At the hackathon, Dr. Moalem said he was approached by an MIT student who suggested sticking a coin on the subjects’ forehead. Since quarters have a standard measurement, it “creates a scale,” said Dr. Moalem.
Dr. Moalem said he had never considered such a simple, elegant solution. The team went on to write code to help standardize facial measurements based on the dimensions of a coin and a credit card.
“Sometimes when you are too close to something, you stop seeing solutions, you only see problems,” Dr. Moalem said. “I needed to step outside my own silo.”

This War of Mine – The Ultimate Serious Game

Curated on Posted on by Stefaan Verhulst

The Escapist Magazine “…there are not many games about the effect of war. Paweł Miechowski thinks that needs to be changed, and he’s doing it with a little game called This War of Mine from the Polish outfit 11 Bit Studio.
“We’re in the moment where we want to talk about important things via games,” Miechowski said. “We are used to the fact that important topics are covered by music, novels, movies, while games mostly about fun. Laughing ‘ha ha ha’ fun.”
In fact, he believes games are well-suited for showing harsh truths and realities, not by ham-fistedly repeating political phrases or mantras, but by allowing you to draw your own conclusions from the circumstances. “Games are perfect for this because they are interactive. Novels or movies are not,” he said. “Games can take you through the experience through your hands, by your eyes. You are not a spectator. You are part of the experience.”
What is the experience of This War of Mine then? 11 Bit Studios was inspired by the firsthand accounts of people who tried to survive within a modern city that had no law, no order or infrastructure due to an ongoing war between militaries. “Everything we did in this game, we did after extensive research. Any mechanics in the game are just a translation of our knowledge of situations in recent history,” he said. “Yugoslavia, Syria, Serbia. Anywhere civilians survived within a besieged city after war. They were all pretty similar, struggling for water, hygiene items, food, simple tools to make something, wood to heat the house up.”
Miechowski showed me an early build of This War of Mine and that’s exactly what it is. Your only goal, which is emblazoned on the screen when you start the game, is to “Survive for 30 days.” You begin inside a 2D representation of a bombed-out building with several floors. You have a few allies with names like Boris or Yvette, each of whom have traits such as “good cook” or “strong, but slow.” Orders can be given to your team, such as to build a bed or to scavenge the piles of junk within your stronghold for any useful items. You usually start out with nothing, but over time you’ll accumulate all sorts of items and materials. The game is in real time, the hours slowly tick by, but once you assign tasks it can be useful to advance the timeline by clicking the “Start Night” button.”

Pursuing adoption of free and open source software in governments

Curated on Posted on by Stefaan Verhulst

at O’Reilly Radar: “Reasons for government agencies to adopt free and open source software have been aired repeatedly, including my article mentioned earlier. A few justifications include:

Access
Document formats must allow citizens to read and submit documents without purchasing expensive tools.
Participation
Free software allows outside developers to comment and contribute.
Public ownership
Whatever tools are developed or purchased by the government should belong to the public, as long as no security issues are involved.
Archiving
Proprietary formats can be abandoned by their vendors after only two or three years.
Transparency
Free software allows the public to trust that the tools are accurate and have no security flaws.
Competition
The government has an interest in avoiding lock-in and ensuring that software can be maintained or replaced.
Cost
In the long run, an agency can save a lot of money by investing in programming or system administration skills, or hiring a firm to maintain the free software.

Obviously, though, government agencies haven’t gotten the memo. I’m not just talking metaphorically; there have been plenty of memos urging the use of open source, ranging from the US Department of Defense to laws passed in a number of countries.
And a lot of progress has taken place. Munich, famously, has switched its desktops to GNU/Linux and OpenOffice.org — but the process took 13 years. Elsewhere in Europe, Spain has been making strides, and the UK promises to switch. In Latin America, Brazil has made the most progress. Many countries that could benefit greatly from using free software — and have even made commitments to do so — are held back by a lack of IT staff with the expertise to do so.
Key barriers include:

Procurement processes
General consensus among knowledgeable software programmers holds that age-old rules for procurement shouldn’t be tossed out, but could be tweaked to admit bids from more small businesses that want to avoid the bureaucracy of registering with the government and answering Requests for Proposals (RFPs).
Habits of passivity
Government managers are well aware of how little they understand the software development process — in fact, if you ask them what they would need to adopt more open source software, they rarely come up with useful answers. They prefer to hand all development and maintenance to an outside firm, which takes full advantage of this to isolate agencies from one another and lock in expensive rates.
Lack of knowledgeable IT staff
The government managers have reason to keep hands off free software. One LibrePlanet audience member reported that he installed a good deal of free software at his agency, but that when he left, they could not find knowledgeable IT hires to take over. Bit by bit, the free software was replaced with proprietary products known to the new staff.
Political pressure
The urge to support proprietary companies doesn’t just come from their sales people or lobbyists. Buying software, like other products, is seen by politicians as a way of ensuring that jobs remain in their communities.
Lack of information
Free software is rarely backed by a marketing and sales organization, and even if managers have the initiative to go look for the software, they don’t know how to evaluate its maturity and readiness.

Thoroughgoing change in the area of software requires managers to have a certain consciousness at a higher level: they need to assert control over their missions and adopt agile workflows. That will inevitably spawn a desire for more control over the software that carries out these missions. A posting by Matthew Burton of the Consumer Financial Protection Bureau shows that radical redirections like this are possible.
In the meantime, here are some ideas that the panelists and audience came up with:

Tweaking procurement
If projects can be kept cheap — as Code for America does using grants and other stratagems — they don’t have to navigate the procurement process. Hackathons and challenges can also produce results — but they have a number of limitations, particularly the difficulty developers have in understanding the requirements of the people they want to serve. Some agencies can also bypass procurement by forming partnerships with community groups who produce the software. Finally, a possibly useful model is to take a cut of income from a project instead of charging the government for it.
Education
Managers have heard of open source software by now — great progress from just a few years ago — and are curious about it. On the production side, we need to help them see the benefits of releasing code, and how to monitor their software vendors to make sure the code is really usable. On the consumption side, we need to teach them maturity models and connect them to strong development projects.
Sharing
Most governments have familiar tasks that can be met by the same software base, but end up paying to reinvent (or just reinstall) the wheel. Code for America started a peer network to encourage managers to talk to one another about solutions. The Brazilian government has started a Public Software Portal. The European Union has an open source database and the US federal government has posted a list of government software released as open source.”

Online tools for engaging citizens in the legislative process

Curated on Posted on by Stefaan Verhulst

Andrew Mandelbaum  from OpeningParliament.org: “Around the world, parliaments, governments, civil society organizations, and even individual parliamentarians, are taking measures to make the legislative process more participatory. Some are creating their own tools — often open source, which allows others to use these tools as well — that enable citizens to markup legislation or share ideas on targeted subjects. Others are purchasing and implementing tools developed by private companies to good effect. In several instances, these initiatives are being conducted through collaboration between public institutions and civil society, while many compliment online and offline experiences to help ensure that a broader population of citizens is reached.
The list below provides examples of some of the more prominent efforts to engage citizens in the legislative process.
Brazil
Implementer: Brazilian Chamber of Deputies…
Website: http://edemocracia.camara.gov.br/
Additional Information: OpeningParliament.org Case Study
Estonia
Implementer: Estonian President & Civil Society
Project Name: Rahvakogu (The People’s Assembly)…
Website: http://www.rahvakogu.ee/
Additional Information: Enhancing Estonia’s Democracy Through Rahvakogu
Finland
Implementer: Finnish Parliament
Project Name: Inventing Finland again! (Keksitään Suomi uudelleen!)…
Website: http://www.suomijoukkoistaa.fi/
Additional Information: Democratic Participation and Deliberation in Crowdsourced Legislative Processes: The Case of the Law on Off-Road Traffic in Finland
France
Implementer: SmartGov – Démocratie Ouverte…
Website: https://www.parlement-et-citoyens.fr/
Additional Information: OpeningParliament Case Study
Italy
Implementer: Government of Italy
Project Name: Public consultation on constitutional reform…
Website: http://www.partecipa.gov.it/
Spain
Implementer: Basque Parliament…
Website: http://www.adi.parlamentovasco.euskolegebiltzarra.org/es/
Additional Information: Participation in Parliament
United Kingdom
Implementer: Cabinet Office
Project Name: Open Standards Consultation…
Website: http://consultation.cabinetoffice.gov.uk/openstandards/
Additional Information: Open Policy Making, Open Standards Consulation; Final Consultation Documents
United States
Implementer: OpenGov Foundation
Project Name: The Madison Project
Tool: The Madison Project“

Belonging: Solidarity and Division in Modern Societies

Curated on Posted on by Stefaan Verhulst

New book by Montserrat Guibernau: “It is commonly assumed that we live in an age of unbridled individualism, but in this important new book Montserrat Guibernau argues that the need to belong to a group or community – from peer groups and local communities to ethnic groups and nations – is a pervasive and enduring feature of modern social life.
The power of belonging stems from the potential to generate an emotional attachment capable of fostering a shared identity, loyalty and solidarity among members of a given community. It is this strong emotional dimension that enables belonging to act as a trigger for political mobilization and, in extreme cases, to underpin collective violence.
Among the topics examined in this book are identity as a political instrument; emotions and political mobilization; the return of authoritarianism and the rise of the new radical right; symbols and the rituals of belonging; loyalty, the nation and nationalism. It includes case studies from Britain, Spain, Catalonia, Germany, the Middle East and the United States.”

Selected Readings on Data Visualization

Curated on Posted on by Andrew Young

The Living Library’s Selected Readings series seeks to build a knowledge base on innovative approaches for improving the effectiveness and legitimacy of governance. This curated and annotated collection of recommended works on the topic of data visualization was originally published in 2013.

Data visualization is a response to the ever-increasing amount of  information in the world. With big data, informatics and predictive analytics, we have an unprecedented opportunity to revolutionize policy-making. Yet data by itself can be overwhelming. New tools and techniques for visualizing information can help policymakers clearly articulate insights drawn from data. Moreover, the rise of open data is enabling those outside of government to create informative and visually arresting representations of public information that can be used to support decision-making by those inside or outside governing institutions.

Selected Reading List (in alphabetical order)

Annotated Selected Reading List (in alphabetical order)

Duke, D.J., K.W. Brodlie, D.A. Duce and I. Herman. “Do You See What I Mean? [Data Visualization].” IEEE Computer Graphics and Applications 25, no. 3 (2005): 6–9. http://bit.ly/1aeU6yA.

  • In this paper, the authors argue that a more systematic ontology for data visualization to ensure the successful communication of meaning. “Visualization begins when someone has data that they wish to explore and interpret; the data are encoded as input to a visualization system, which may in its turn interact with other systems to produce a representation. This is communicated back to the user(s), who have to assess this against their goals and knowledge, possibly leading to further cycles of activity. Each phase of this process involves communication between two parties. For this to succeed, those parties must share a common language with an agreed meaning.”
  • That authors “believe that now is the right time to consider an ontology for visualization,” and “as visualization move from just a private enterprise involving data and tools owned by a research team into a public activity using shared data repositories, computational grids, and distributed collaboration…[m]eaning becomes a shared responsibility and resource. Through the Semantic Web, there is both the means and motivation to develop a shared picture of what we see when we turn and look within our own field.”

Friendly, Michael. “A Brief History of Data Visualization.” In Handbook of Data Visualization, 15–56. Springer Handbooks Comp.Statistics. Springer Berlin Heidelberg, 2008. http://bit.ly/17fM1e9.

  • In this paper, Friendly explores the “deep roots” of modern data visualization. “These roots reach into the histories of the earliest map making and visual depiction, and later into thematic cartography, statistics and statistical graphics, medicine and other fields. Along the way, developments in technologies (printing, reproduction), mathematical theory and practice, and empirical observation and recording enabled the wider use of graphics and new advances in form and content.”
  • Just as the general the visualization of data is far from a new practice, Friendly shows that the graphical representation of government information has a similarly long history. “The collection, organization and dissemination of official government statistics on population, trade and commerce, social, moral and political issues became widespread in most of the countries of Europe from about 1825 to 1870. Reports containing data graphics were published with some regularity in France, Germany, Hungary and Finland, and with tabular displays in Sweden, Holland, Italy and elsewhere.”

Graves, Alvaro and James Hendler. “Visualization Tools for Open Government Data.” In Proceedings of the 14th Annual International Conference on Digital Government Research, 136–145. Dg.o ’13. New York, NY, USA: ACM, 2013. http://bit.ly/1eNSoXQ.

  • In this paper, the authors argue that, “there is a gap between current Open Data initiatives and an important part of the stakeholders of the Open Government Data Ecosystem.” As it stands, “there is an important portion of the population who could benefit from the use of OGD but who cannot do so because they cannot perform the essential operations needed to collect, process, merge, and make sense of the data. The reasons behind these problems are multiple, the most critical one being a fundamental lack of expertise and technical knowledge. We propose the use of visualizations to alleviate this situation. Visualizations provide a simple mechanism to understand and communicate large amounts of data.”
  • The authors also describe a prototype of a tool to create visualizations based on OGD with the following capabilities:
    • Facilitate visualization creation
    • Exploratory mechanisms
    • Viralization and sharing
    • Repurpose of visualizations

Hidalgo, César A. “Graphical Statistical Methods for the Representation of the Human Development Index and Its Components.” United Nations Development Programme Human Development Reports, September 2010. http://bit.ly/166TKur.

  • In this paper for the United Nations Human Development Programme, Hidalgo argues that “graphical statistical methods could be used to help communicate complex data and concepts through universal cognitive channels that are heretofore underused in the development literature.”
  • To support his argument, representations are provided that “show how graphical methods can be used to (i) compare changes in the level of development experienced by countries (ii) make it easier to understand how these changes are tied to each one of the components of the Human Development Index (iii) understand the evolution of the distribution of countries according to HDI and its components and (iv) teach and create awareness about human development by using iconographic representations that can be used to graphically narrate the story of countries and regions.”

Stowers, Genie. “The Use of Data Visualization in Government.” IBM Center for The Business of Government, Using Technology Series, 2013. http://bit.ly/1aame9K.

  • This report seeks “to help public sector managers understand one of the more important areas of data analysis today — data visualization. Data visualizations are more sophisticated, fuller graphic designs than the traditional spreadsheet charts, usually with more than two variables and, typically, incorporating interactive features.”
  • Stowers also offers numerous examples of “visualizations that include geographical and health data, or population and time data, or financial data represented in both absolute and relative terms — and each communicates more than simply the data that underpin it. In addition to these many examples of visualizations, the report discusses the history of this technique, and describes tools that can be used to create visualizations from many different kinds of data sets.”

The Age of Democracy

Curated on Posted on by Stefaan Verhulst

Xavier Marquez at Abandoned Footnotes: “This is the age of democracy, ideologically speaking. As I noted in an earlier post, almost every state in the world mentions the word “democracy” or “democratic” in its constitutional documents today. But the public acknowledgment of the idea of democracy is not something that began just a few years ago; in fact, it goes back much further, all the way back to the nineteenth century in a surprising number of cases.
Here is a figure I’ve been wanting to make for a while that makes this point nicely (based on data graciously made available by the Comparative Constitutions Project). The figure shows all countries that have ever had some kind of identifiable constitutional document (broadly defined) that mentions the word “democracy” or “democratic” (in any context – new constitution, amendment, interim constitution, bill of rights, etc.), arranged from earliest to latest mention. Each symbol represents a “constitutional event” – a new constitution adopted, an amendment passed, a constitution suspended, etc. – and colored symbols indicate that the text associated with the constitutional event in question mentions the word “democracy” or “democratic”…
The earliest mentions of the word “democracy” or “democratic” in a constitutional document occurred in Switzerland and France in 1848, as far as I can tell.[1] Participatory Switzerland and revolutionary France look like obvious candidates for being the first countries to embrace the “democratic” self-description; yet the next set of countries to embrace this self-description (until the outbreak of WWI) might seem more surprising: they are all Latin American or Caribbean (Haiti), followed by countries in Eastern Europe (various bits and pieces of the Austro-Hungarian empire), Southern Europe (Portugal, Spain), Russia, and Cuba. Indeed, most “core” countries in the global system did not mention democracy in their constitutions until much later, if at all, despite many of them having long constitutional histories; even French constitutions after the fall of the Second Republic in 1851 did not mention “democracy” until after WWII. In other words, the idea of democracy as a value to be publicly affirmed seems to have caught on first not in the metropolis but in the periphery. Democracy is the post-imperial and post-revolutionary public value par excellence, asserted after national liberation (as in most of the countries that became independent after WWII) or revolutions against hated monarchs (e.g., Egypt 1956, Iran 1979, both of them the first mentions of democracy in these countries but not their first constitutions).

Today only 16 countries have ever failed to mention their “democratic” character in their constitutional documents (Australia, Brunei, Denmark, Japan, Jordan, Malaysia, Monaco, Nauru, Oman, Samoa, Saudi Arabia, Singapore, Tonga, the United Kingdom, the USA, and Vatican City).[2] And no country that has ever mentioned “democracy” in an earlier constitutional document fails to mention it in its current constitutional documents (though some countries in the 19th and early 20th centuries went back and forth – mentioning democracy in one constitution, not mentioning it in the next). Indeed, after WWII the first mention of democracy in constitutions tended to be contemporaneous with the first post-independence constitution of the country; and with time, even countries with old and settled constitutional traditions seem to be more and more likely to mention “democracy” or “democratic” in some form as amendments or bills of rights accumulate (e.g., Belgium in 2013, New Zealand in 1990, Canada in 1982, Finland in 1995). The probability of a new constitution mentioning “democracy” appears to be asymptotically approaching 1. To use the language of biology, the democratic “meme” has nearly achieved “fixation” in the population, despite short-term fluctuations, and despite the fact that there appears to be no particular correlation between a state calling itself democratic and actually being democratic, either today or in the past.[3]
Though the actual measured level of democracy around the world has trended upwards (with some ups and downs) over the last two centuries, I don’t think this is the reason why the idea of democracy has achieved near-universal recognition in public documents. Countries do not first become democratic and then call themselves democracies; if anything, most mentions of democracy seem to be rather aspirational, if not entirely cynical. (Though many constitutions that mention democracy were also produced by people who seem to have been genuinely committed to some such ideal, even if the regimes that eventually developed under these constitutions were not particularly democratic). What we see, instead, is a broad process in which earlier normative claims about the basis of authority – monarchical, imperial, etc. – get almost completely replaced, regardless of the country’s cultural context, by democratic claims, regardless of the latter’s effectiveness as an actual basis for authority or the existence of working mechanisms for participation or vertical accountability. (These democratic claims to authority also sometimes coexist in uneasy tension with other claims to authority based on divine revelation, ideological knowledge, or tradition, invented or otherwise; consider the Chinese constitution‘s claims about the “people’s democratic dictatorship” led by the CCP).
I thus suspect the conquest of ideological space by “democratic” language did not happen just because democratic claims to authority (especially in the absence of actual democracy) have proved more persuasive than other claims to authority. Rather, I think the same processes that resulted in the emergence of modern national communities – e.g. the rituals associated with nationalism, which tended to “sacralize” a particular kind of imagined community – led to the symbolic production of the nation not only as the proper object of government but also as its proper active agent (the people, actively ruling itself), regardless of whether or not “the people” had any ability to rule or even to exercise minimal control over the rulers.[4] There thus seems to have been a kind of co-evolution of symbols of nationality and symbols of democracy, helped along by the practice/ritual of drafting constitutions and approving them through plebiscites or other forms of mass politics, a ritual that already makes democratic assumptions about “social contracts.” The question is whether the symbolic politics of democracy eventually has any sort of impact on actual institutions. But more on this later….”

Selected Readings on Smart Disclosure

Curated on Posted on by Andrew Young

The Living Library’s Selected Readings series seeks to build a knowledge base on innovative approaches for improving the effectiveness and legitimacy of governance. This curated and annotated collection of recommended works on the topic of smart disclosure was originally published in 2013.

While much attention is paid to open data, data transparency need not be managed by a simple On/Off switch: It’s often desirable to make specific data available to the public or individuals in targeted ways. A prime example is the use of government data in Smart Disclosure, which provides consumers with data they need to make difficult marketplace choices in health care, financial services, and other important areas. Governments collect two kinds of data that can be used for Smart Disclosure: First, governments collect information on services of high interest to consumers, and are increasingly releasing this kind of data to the public. In the United States, for example, the Department of Health and Human Services collects and releases online data on health insurance options, while the Department of Education helps consumers understand the true cost (after financial aid) of different colleges. Second, state, local, or national governments hold information on consumers themselves that can be useful to them. In the U.S., for example, the Blue Button program was launched to help veterans easily access their own medical records.

Selected Reading List (in alphabetical order)

Annotated Selected Reading List (in alphabetical order)

Better Choices: Better Deals Report on Progress in the Consumer Empowerment Strategy. Progress Report. Consumer Empowerment Strategy. United Kingdom: Department for Business Innovation & Skills, December 2012. http://bit.ly/17MqnL3.

  • The report details the progress made through the United Kingdom’s consumer empowerment strategy, Better Choices: Better Deals. The plan seeks to mitigate knowledge imbalances through information disclosure programs and targeted nudges.
  • The empowerment strategy’s four sections demonstrate the potential benefits of Smart Disclosure: 1. The power of information; 2. The power of the crowd; 3. Helping the vulnerable; and 4. A new approach to Government working with business.
Braunstein, Mark L.,. “Empowering the Patient.” In Health Informatics in the Cloud, 67–79. Springer Briefs in Computer Science. Springer New York Heidelberg Dordrecht London, 2013. https://bit.ly/2UB4jTU.
  • This book discusses the application of computing to healthcare delivery, public health and community based clinical research.
  • Braunstein asks and seeks to answer critical questions such as: Who should make the case for smart disclosure when the needs of consumers are not being met? What role do non-profits play in the conversation on smart disclosure especially when existing systems (or lack thereof) of information provision do not work or are unsafe?

Brodi, Elisa. “Product-Attribute Information” and “Product-Use Information”: Smart Disclosure and New Policy Implications for Consumers’ Protection. SSRN Scholarly Paper. Rochester, NY: Social Science Research Network, September 4, 2012. http://bit.ly/17hssEK.

  • This paper from the Research Area of the Bank of Italy’s Law and Economics Department “surveys the literature on product use information and analyzes whether and to what extent Italian regulator is trying to ensure consumers’ awareness as to their use pattern.” Rather than focusing on the type of information governments can release to citizens, Brodi proposes that governments require private companies to provide valuable use pattern information to citizens to inform decision-making.
  • The form of regulation proposed by Brodi and other proponents “is based on a basic concept: consumers can be protected if companies are forced to disclose data on the customers’ consumption history through electronic files.”
National Science and Technology Council. Smart Disclosure and Consumer Decision Making: Report of the Task Force on Smart Disclosure. Task Force on Smart Disclosure: Information and Efficiency in Consumer Markets. Washington, DC: United States Government: Executive Office of the President, May 30, 2013. http://1.usa.gov/1aamyoT.
    • This inter-agency report is a comprehensive description of smart disclosure approaches being used across the Federal Government. The report not only highlights the importance of making data available to consumers but also to innovators to build better options for consumers.
  • In addition to providing context about government policies that guide smart disclosure initiatives, the report raises questions about what parties have influence in this space.

“Policies in Practice: The Download Capability.” Markle Connecting for Health Work Group on Consumer Engagement, August 2010. http://bit.ly/HhMJyc.

  • This report from the Markle Connecting for Health Work Group on Consumer Engagement — the creator of the Blue Button system for downloading personal health records — features a “set of privacy and security practices to help people download their electronic health records.”
  • To help make health information easily accessible for all citizens, the report lists a number of important steps:
    • Make the download capability a common practice
    • Implement sound policies and practices to protect individuals and their information
    • Collaborate on sample data sets
    • Support the download capability as part of Meaningful Use and qualified or certified health IT
    • Include the download capability in procurement requirements.
  • The report also describes the rationale for the development of the Blue Button — perhaps the best known example of Smart Disclosure currently in existence — and the targeted release of health information in general:
    • Individual access to information is rooted in fair information principles and law
    • Patients need and want the information
    • The download capability would encourage innovation
    • A download capability frees data sources from having to make many decisions about the user interface
    • A download capability would hasten the path to standards and interoperability.
Sayogo, Djoko Sigit, and Theresa A. Pardo. “Understanding Smart Data Disclosure Policy Success: The Case of Green Button.” In Proceedings of the 14th Annual International Conference on Digital Government Research, 72–81. New York: ACM New York, NY, USA, 2013. http://bit.ly/1aanf1A.
  • This paper from the Proceedings of the 14th Annual International Conference on Digital Government Research explores the implementation of the Green Button Initiative, analyzing qualitative data from interviews with experts involved in Green Button development and implementation.
  • Moving beyond the specifics of the Green Button initiative, the authors raise questions on the motivations and success factors facilitating successful collaboration between public and private organizations to support smart disclosure policy.

Thaler, Richard H., and Will Tucker. “Smarter Information, Smarter Consumers.” Harvard Business Review January – February 2013. The Big Idea. http://bit.ly/18gimxw.

  • In this article, Thaler and Tucker make three key observations regarding the challenges related to smart disclosure:
    • “We are constantly confronted with information that is highly important but extremely hard to navigate or understand.”
    • “Repeated attempts to improve disclosure, including efforts to translate complex contracts into “plain English,” have met with only modest success.”
    • “There is a fundamental difficulty of explaining anything complex in simple terms. Most people find it difficult to write instructions explaining how to tie a pair of shoelaces.

Policy making 2.0: From theory to practice

Curated on Posted on by Stefaan Verhulst

Paper by E. Ferro, EN Loukis, Y. Charalabidis, and M. Osella in Government Information Quarterly: “Government agencies are gradually moving from simpler towards more sophisticated and complex practices of social media use, which are characterized by important innovations at the technological, political and organizational level. This paper intends to provide two contributions to the current discourse about such advanced approaches to social media exploitation. The first is of practical nature and has to do with assessing the potential and the challenges of a centralized cross-platform approach to social media by government agencies in their policy making processes. The second contribution is of theoretical nature and consists in the development of a multi-dimensional framework for an integrated evaluation of such advanced practices of social media exploitation in public policy making from technological, political and organizational perspectives, drawing from theoretical constructs from different domains. The proposed framework is applied for the evaluation of a pilot consultation campaign conducted in Italy using multiple social media and concerning the large scale application of a telemedicine program.”

Open Data Barometer

Curated on Posted on by Stefaan Verhulst

Press Release by the Open Data Research Network: “New research by World Wide Web Foundation and Open Data Institute shows that 55% of countries surveyed have open data initiatives in place, yet less than 10% of key government datasets across the world are truly open to the public…the Open Data Barometer. This 77-country study, which considers the interlinked areas of policy, implementation and impact, ranks the UK at number one. The USA, Sweden, New Zealand, Denmark and Norway (tied) make up the rest of the top five. Kenya is ranked as the most advanced developing country, outperforming richer countries such as Ireland, Italy and Belgium in global comparisons.

The Barometer reveals that:

  • 55% of countries surveyed have formal open data policies in place.

  • Valuable but potentially controversial datasets – such as company registers and land registers – are among the least likely to be openly released. It is unclear whether this stems from reluctance to drop lucrative access charges, or from desire to keep a lid on politically sensitive information, or both. However, the net effect is to severely limit the accountability benefits of open data.

  • When they are released, government datasets are often issued in inaccessible formats. Across the nations surveyed, fewer that than 1 in 10 key datasets that could be used to hold governments to account, stimulate enterprise, and promote better social policy, are available and truly open for re-use.

The research also makes the case that:

  • Efforts should be made to empower civil society, entrepreneurs and members of the public to use government data made available, rather than simply publishing data online.

  • Business activity and innovation can be boosted by strong open data policies.  In Denmark, for example, free of charge access to address data has had a significant economic impact. In 2010, an evaluation recorded an estimated financial benefit to society of EUR 62 million against costs of EUR 2million.”