Crowdsourcing Medical Data Through Gaming

Curated on Posted on by Stefaan Verhulst

Felix Morgan in The Austin Chronicle: “Video games have changed the way we play, but they also have the potential to change the way we research and solve problems, in fields such as health care and education. One game that’s made waves in medical research is Sea Hero Quest. This smartphone game has created a groundbreaking approach to data collection, leading to an earlier diagnosis of dementia. So far, 2.5 million people have played the game, providing scientists with years’ worth of data across borders and demographics.

By offering this game as a free mobile app, researchers are overcoming the ever-present problems of small sample sizes and time-consuming data gathering in empirical research. Sea Hero Quest was created by Glitchers, partnering with University College London, University of East Anglia, and Alzheimer’s Research. As players navigate mazes, shoot flares into baskets, and photograph sea creatures, they answer simple demographic questions and generate rich data sets.

“The idea of crowdsourced data-gathering games for research is a new and exciting method of obtaining data that would be prohibitively expensive otherwise,” says Paul Toprac, who along with his colleague Matt O’Hair, run the Simulation and Game Applications (SAGA) Lab at University of Texas Austin. Their team helps researchers across campus and in the private sector design, implement, and find funding for video game-based research.

O’Hair sees a lot of potential for Sea Hero Quest and other research-based games. “One of the greatest parts about the SAGA Lab is that we get to help researchers make strides in these kinds of fields,” he says.

The idea of using crowdsourcing for data collection is relatively new, but using gaming for research is something that has been well established. Last year at SXSW, Nolan Bushnell, the founder of Atari, made a statement that video games were the key to understanding and treating dementia and related issues, which certainly seems possible based on the preliminary results from Sea Hero Quest. “We have had about 35 years of research using games as a medium,” Toprac says. “However, only recently have we used games as a tool for explicit data gathering.”…(More)”

International Open Data Roadmap

Curated on Posted on by Stefaan Verhulst

IODC16: We have entered the next phase in the evolution of the open data movement. Just making data publicly available can no longer be the beginning and end of every conversation about open data. The focus of the movement is now shifting to building open data communities, and an increasingly sophisticated network of communities have begun to make data truly useful in addressing a myriad of problems facing citizens and their governments around the world:

  • More than 40 national and local governments have already committed to implement the principles of the International Open Data Charter;
  • Open data is central to many commitments made this year by world leaders, including the Sustainable Development Goals (SDGs), the Paris Climate Agreement, and the G20 Anti Corruption Data Principles; and
  • Open data is also an increasingly local issue, as hundreds of cities and sub-national governments implement open data policies to drive transparency, economic growth, and service delivery in close collaboration with citizens.

Screen Shot 2017-01-17 at 11.32.32 AMTo further accelerate collaboration and increase the impact of open data activities globally, the Government of Spain, the International Development Research Centre, the World Bank, and the Open Data for Development Network recently hosted the fourth International Open Data Conference (IODC) on October 6-7, 2106 in Madrid, Spain.

Under the theme of Global Goals, Local Impact, the fourth IODC reconvened an ever expanding open data community to showcase best practices, confront shared challenges, and deepen global and regional collaboration in an effort to maximize the impact of open data. Supported by a full online archive of the 80+ sessions and 20+ special events held in Madrid during the first week of October 2016, this report reflects on the discussions and debates that took place, as well as the information shared on a wide range of vibrant global initiatives, in order to map out the road ahead, strengthen cohesion among existing efforts, and explore new ways to use open data to drive social and economic inclusion around the world….(More)”

Open Data Inventory 2016

Curated on Posted on by Stefaan Verhulst

“Open Data Watch is pleased to announce the release of the 2016 Open Data Inventory (ODIN). The new ODIN results provide a comprehensive review of the coverage and openness of official statistics in 173 countries around the world, including most OECD countries.  Featuring a methodology updated to reflect the latest international open data standards, ODIN 2016 results are fully available online at odin.opendatawatch.com, including interactive functions to compare year-to-year results from 122 countries.

ODIN assesses the coverage and openness of data provided on the websites maintained by national statistical offices (NSOs). The overall ODIN score is an indicator of how complete and open an NSO’s data offerings are. In addition to ratings of coverage and openness in twenty statistical categories, ODIN assessments provide the online location of key indicators in each data category, permitting quick access to hundreds of indicators.

ODIN 2016 Top Scores Reveal Gaps Between Openness and Coverage

In the 2016 round, the top scores went to high-income and OECD countries. Sweden was ranked first overall with a score of 81. Sweden was also the most open site, with an openness score of 91. Among non-OECD countries, the highest rank was Lithuania with an overall score of 77. Among non-high-income countries, Mexico again earned the highest ranking with a score of 67, followed by the lower-middle-income economies of Mongolia (61), and Moldova (59). Among low-income countries, Rwanda received the highest score of 55. ODIN overall scores are scaled from 0 to 100 and provide equal weighting for social, economic, and environmental statistics….

The new ODIN website allows users to compare and download scores for 2015 and 2016….(More)”

The Emergence of a Post-Fact World

Curated on Posted on by Stefaan Verhulst

Francis Fukuyama in Project Syndicate: “One of the more striking developments of 2016 and its highly unusual politics was the emergence of a “post-fact” world, in which virtually all authoritative information sources were called into question and challenged by contrary facts of dubious quality and provenance.

The emergence of the Internet and the World Wide Web in the 1990s was greeted as a moment of liberation and a boon for democracy worldwide. Information constitutes a form of power, and to the extent that information was becoming cheaper and more accessible, democratic publics would be able to participate in domains from which they had been hitherto excluded.

The development of social media in the early 2000s appeared to accelerate this trend, permitting the mass mobilization that fueled various democratic “color revolutions” around the world, from Ukraine to Burma (Myanmar) to Egypt. In a world of peer-to-peer communication, the old gatekeepers of information, largely seen to be oppressive authoritarian states, could now be bypassed.

While there was some truth to this positive narrative, another, darker one was also taking shape. Those old authoritarian forces were responding in dialectical fashion, learning to control the Internet, as in China, with its tens of thousands of censors, or, as in Russia, by recruiting legions of trolls and unleashing bots to flood social media with bad information. These trends all came together in a hugely visible way during 2016, in ways that bridged foreign and domestic politics….

The traditional remedy for bad information, according to freedom-of-information advocates, is simply to put out good information, which in a marketplace of ideas will rise to the top. This solution, unfortunately, works much less well in a social-media world of trolls and bots. There are estimates that as many as a third to a quarter of Twitter users fall into this category. The Internet was supposed to liberate us from gatekeepers; and, indeed, information now comes at us from all possible sources, all with equal credibility. There is no reason to think that good information will win out over bad information….

The inability to agree on the most basic facts is the direct product of an across-the-board assault on democratic institutions – in the US, in Britain, and around the world. And this is where the democracies are headed for trouble. In the US, there has in fact been real institutional decay, whereby powerful interest groups have been able to protect themselves through a system of unlimited campaign finance. The primary locus of this decay is Congress, and the bad behavior is for the most part as legal as it is widespread. So ordinary people are right to be upset.

And yet, the US election campaign has shifted the ground to a general belief that everything has been rigged or politicized, and that outright bribery is rampant. If the election authorities certify that your favored candidate is not the victor, or if the other candidate seemed to perform better in a debate, it must be the result of an elaborate conspiracy by the other side to corrupt the outcome. The belief in the corruptibility of all institutions leads to a dead end of universal distrust. American democracy, all democracy, will not survive a lack of belief in the possibility of impartial institutions; instead, partisan political combat will come to pervade every aspect of life….(More)”

Prisoners use VR programme as a rehabilitation tool

Curated on Posted on by Stefaan Verhulst

Springwise: “The global prison population currently totals 10.5 million, and while many countries including the UK and US have seen a steady decline in crime rates over the past decade, the rate of reoffending prisoners has increased. About two-thirds of released prisoners in the US are rearrested within three years of release, and about three-quarters of released prisoners were rearrested within five. Virtual Rehab is a new project that seeks to rehabilitate inmates using VR technology.

Virtual Rehab’s interactive tool includes education on a broad range of themes, from family violence and sexual offences to psychological challenges including mental & emotional disorders. The programme works by placing the prisoner into interactive role play scenarios which reverse the aggressor / victim roles, propelling the prisoner into the skin of an assaulted person with the aim of developing empathy. The programme also includes formal education and vocational job training, developing professional skills to help ex-offenders thrive in the real world. …

Virtual reality has already had an impact in various areas related to rehabilitation, including in the treatment of conditions such as PTSD and anxiety. At Springwise, we recently covered two programmes (a glove and an online platform) that use online gaming to support the recovery of patients….(More)”

Cancer Research Orgs Release Big Data for Precision Medicine

Curated on Posted on by Stefaan Verhulst

 at HealthITAnalytics: “The American Association for Cancer Research (AACR) is releasing more than 19,000 de-identified genomic records to further the international research community’s explorations into precision medicine.

The big data dump, which includes information on 59 major types of cancer, including breast, colorectal, and lung cancer, is a result of the AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE) initiative, and includes both genomic and some clinical data on consenting patients….

“These data were generated as part of routine patient care and without AACR Project GENIE they would likely never have been shared with the global cancer research community.”

Eight cancer research institutions, including five based in the United States, have contributed to the first phase of the GENIE project.  Dana-Farber Cancer Institute in Boston, Memorial Sloan Kettering Cancer Center in New York City, and the University of Texas MD Anderson Cancer Center in Houston are among the collaborators.

Alongside institutions in Paris, the Netherlands, Toronto, Nashville, and Baltimore, these organizations aim to expand the research community’s knowledge of cancer and its potential treatments by continuing to make the exchange of high-grade clinical data a top priority.

“We are committed to sharing not only the real-world data within the AACR Project GENIE registry but also our best practices, from tips about assembling an international consortium to the best variant analysis pipeline, because only by working together will information flow freely and patients benefit rapidly,” Sawyers added…

Large-scale initiatives like the AACR Project GENIE, alongside separate data collection efforts like the VA’s Million Veterans Project, the CancerLinQ platform, Geisinger Health System’s MyCode databank, and the nascent PMI Cohort, will continue to make critical genomic and clinical data available to investigators across the country and around the world…(More)”.

Inside the Digital Revolution

Curated on Posted on by Stefaan Verhulst

Heather Brooks in the Journal of International Affairs: “Technology and transparency combined to create the digital revolution, which in turn has ushered in a new form o f monitory democracy. Communicative abundance and global interconnection mean the democratic franchise can expand and deepen, but the author argues that it matters who is made transparent and for what purpose. Content and context matter. Technology and transparency can be used to strengthen democracy by opening up government to citizens, but the same tools can also be used by the state to surveil and disempower citizens, thereby damaging democracy. The author uses three case studies to discuss the impact o f digitizing information on power relations between citizens and states. First, her observations as the journalist and litigant in the legal case that forced the digitization o f UK parliamentary expense records, which when leaked created one o f the biggest political scandals in that country for decades. Second, she obtained the entire set o f U. S. diplomatic cables and reported on their contents for the Guardian. Lastly, she served as a member o f the Independent Surveillance Review Panel, set up by the UK government to investigate allegations made by Edward Snowden that the UK and U.S. governments were conducting mass surveillance programs that were potentially illegal and lacked adequate oversight. The case studies show how journalism is integral not only to identifying useful civic information but also maximizing the public good from leaked information while minimizing harm….(More)”

Results of early Open Government Partnership initiatives

Curated on Posted on by Stefaan Verhulst

The Open Government Partnership: “The search for these stories ended with finding seven very different reform initiatives in different regions and covering a broad range of open government topics.

In Costa Rica, we learn about how the government is using its participation in OGP to restart a process halted for 23 years to create a consultation mechanism that will allow indigenous groups to participate in all policy making decisions that affect them, and the results of the dialogue leading to an improvement in the delivery of public services.

The Chilean story documents how a 10-year campaign to regulate influence peddling was given a boost by an explicit commitment included in the first Chilean action plan to introduce legislation to regulate lobbying – a commitment since fulfilled. The resulting Lobbying Act sheds new light on the relationship between officials and influence groups and is beginning to democratize access to authorities.

Italy’s OpenCoesione and its spin-off initiatives show how top-down open data initiatives on public spending can be combined with bottom-up, data-driven monitoring to promote accountability and public participation in the policy-making process, including promoting civic engagement amongst school students.

The Tanzanian case study tells the story of how the “How Do I?” – or “Nifanyeje?” – website is making information on basic public services available to citizens and cutting down transaction times and costs, but it also highlights the need to still reach the last mile in a country where Internet penetration remains low.

Indonesia’s initiative to create a One Map portal with official base maps for the country, part of a much larger initiative of synchronizing various maps for the country that when completed could help resolve land-related conflicts and address illegal deforestation, shows technical progress and some improvements in inter-agency cooperation.

In Macedonia, we learn how opening up data on air quality has acted as an engine for civic activism and about short and medium-term policy options being implemented and explored by the relevant authorities as a result.

Finally, the case from Israel shows how collaboration between civil society and champions within the Parliament is helping make data on the state budget accessible to citizens, journalists, and the parliamentarians themselves.

Each story demonstrates measurable progress and the added value of the collaboration between government and civil society that is at the very heart of OGP. The stories also show the immense importance of political will, bureaucratic buy-in, adequate resourcing, and demand-side calls for accountability in ensuring that the reforms take root and continue into the future, so that their impact can be felt by a broader range of citizens. In that sense, the last chapter for each story is still to be written. In a majority of the cases, these commitments’ inclusion in the OGP National Action Plans gave prominence and momentum to the envisioned reforms, helping them along. We hope to be able to continue to track these reforms in the years to come….(More)”.

The melting down of government: A multidecade perspective

Curated on Posted on by Stefaan Verhulst

Bert A. Rockman in the Special 30th Anniversary Issue of Governance: “The editors of Governance have asked me to assess the extent and nature of change in the governing process since the origins of the journal 30 years ago. This is an engaging task but a difficult one. It is difficult because trend lines rarely have a definitive beginning point—or at least if similar tendencies are seen across national boundaries, they rarely begin at the same time. It is also difficult because states and nations have different traditions and may be more or less willing to accept lessons from elsewhere. As well, national entities and even regional ones may react differently to similar problems. Old Europe, as Donald Rumsfeld the former U.S. Defense Secretary once disparagingly referred to the more democratically stable and prosperous countries of Western Europe, still seems more likely to adhere to globalization, freedom of movement across national borders, and at least some tolerance of immigration than has been the case in the Eastern and Central parts of the continent or, for that matter, in the United States.

Because it is so difficult to see uniformities across all states, I shall concentrate my attention on the case of the United States with which I am most familiar while recognizing that all developed states have been facing challenges to their industrial base and all have been facing complicated problems of labor displacement through technology and absorption of immigrant populations in the midst of diminished economic growth and modest recovery from the financial crisis of 2008. To put it simply, there have been greater challenges and fewer financial and political resources.

I see four very different tendencies at work in the process of governing and the limitations that they may impose on government. Thinking of these in terms of a series of concentric circles and moving in succession from those with the broadest radius (sociopolitical) to those with the narrowest (machinery and fiscal capabilities of government), I will characterize them accordingly as (a) the confidence in government problem; (b) the frozen political alignment problem—or as it is known in the United States, political polarization; (c) the cult of efficiency in government and also private enterprise, which has resulted in substantial outsourcing and privatization; and (d) public austerity that, among other things, has altered the balance of power between governmental authority and powerful business and nonprofit organizations. I cannot be certain that these elements interact with one another. How they do and if they do is a matter for some further endeavor….(More)”

Open eGovernment practices in all EU Member States make public services more collaborative, efficient and inclusive

Curated on Posted on by Stefaan Verhulst

European Commission: “In a digital single market, public services should be digital, open and cross-border by design. As part of the eGovernment Action Plan, public administrations and public institutions should be providing borderless user-friendly and end-to-end digital public services to all citizens and businesses by 2020. Two Commission studies highlight how collaborative and digitally-based Open eGovernment Services (OGS) can enhance transparency and responsiveness in citizens’ dealings with administration, build trust across sectors and provide better public services.
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The studies provide a valuable information base and could inspire current and future activities under the European Commission e-Government Action Plan 2016-2020, in particular those related to facilitating digital interaction between administrations and citizens/businesses.

The emergence of Open Government in Member States

The study “Towards faster implementation and uptake of open government” maps 395 inspiring examples of Open eGovernment Services across Europe. This wealth of data and practices, is proof of successful cooperation between public administrations, companies, organizations and citizens. It demonstrates how the process of digitalisation can create better opportunities for everyone and shows concretely how to make it happen. The European Commission will give visibility to these best practices, support the policy processes and invest in digital innovation in the public sector.

Openness between public administrations

This is mostly driven by administrations seeking better efficiency and cost reduction. For example, applying once-only principle – under which people and businesses provide information only once to public authorities – may result in increasingly automated exchanges. For example,

  • By applying the once-only principle, the Spanish government saved € 2.8 million (costs of exchange of paper documents between administrations) by introducing SIR (System of Interconnection of Registers).
  • In the Netherlands, public administrations share among them the data hosted in 12 existing base registers., This helps to speed up administrative processes and citizens or companies no longer need to provide the same information time and again.
  • Agiv, the agency for geographical information in Flanders (Belgium) has a central platform KLIP where administrations share the location of underground cables and pipes, helping thus companies to plan construction works. Its services were requested 100.000 times during the first six months after its launch.

Openness towards third parties

Openess towards third parties aims at increasing transparency and responsiveness and even participation in decision-making, for instance,

  • Greek citizens use the Vouliwatch platform to publicly question government officials and share their own expertise;
  • More and more cities foresee that citizens can have a say about how their money gets spent. The residents of Madrid vote online on 2% of city budget and those of Paris even on 5% of municipal expenses and can suggest projects within these financial limits; the inhabitants of Southern Italy submit formal web-based evaluations of public services and infrastructure thanks to cooperation of administration with the third sector.
  • OpenSpending, an initiative by the Open Knowledge Foundation, contains datasets  on public administrations expenditure in 76 countries so that citizens can see how authorities spend taxpayers’ money. Moreover, it allowed the UK government to save  £ 4 million in only 15 minutes by simply comparing markets for different services.

Open government can also unlock economic potential for growth and jobs, for example,

  • The Belgian Mercurius e-invoicing and e-procurement platform which allows all levels of administrations and businesses to cooperate and reduces the costs of invoices for companies by 62% (with expected 4,5 M € of savings per year)
  • The Dutch Base Register Topography works as open data for anyone interested and has developed TopoGPS , a GPS application, based on data from the base registry, with an economic effect estimated at €9 million.
  • The British NHS Job Platform, now used by 500 NHS employers,  is a focal point for job seekers in the medical sector. Also in the UK, TransportAPI aggregates and analyses public transport data, allowing users and developers to access the transport data opened up by public transportation bodies and to work on their own applications.

Numerous initiatives also support inclusion:

  • Konto Bariery uses accessibility data for an app-based map of buildings accessible to disabled people in Czech Republic and the non-profit
  • Techfugees is an initiative organised by tech professionals that makes engineers, entrepreneurs, NGOs, public administrations collaborate in order to provide innovative technology solutions to help refugees….(More)