The Royal Statistical Society Data Manifesto

Curated on Posted on by Stefaan Verhulst
ePSiplatform: “A Data Manifesto released by the Royal Statistical Society describes ten recommendations that focus on how the next UK government can improve data for policymaking, democracy and for prosperity…..the Society calls for official statistics to be at the heart of policy debate and recommends that the Office for National Statistics and the wider Government Statistical Service be given adequate resources, as well as calling for greater investment in research, science and innovation.
The document shows that the Society is broadly supportive of the open data agenda; in particular the opening up of government data and giving citizens greater access to quality local data.
It calls for greater data sharing between government departments for statistics and research purposes and believes the private sector should be encouraged to share data with researchers for the same purpose. It also calls for an end to pre-release access to official statistics….Download the Data Manifesto in PDF format.”

The Precision Medicine Initiative: Data-Driven Treatments as Unique as Your Own Body

Curated on Posted on by Stefaan Verhulst

White House Press Release: “…the Precision Medicine Initiative will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.

Most medical treatments have been designed for the “average patient.” As a result of this “one-size-fits-all-approach,” treatments can be very successful for some patients but not for others.  This is changing with the emergence of precision medicine, an innovative approach to disease prevention and treatment that takes into account individual differences in people’s genes, environments, and lifestyles.  Precision medicine gives clinicians tools to better understand the complex mechanisms underlying a patient’s health, disease, or condition, and to better predict which treatments will be most effective….

Objectives of the Precision Medicine Initiative:

  • More and better treatments for cancer: NCI will accelerate the design and testing of effective, tailored treatments for cancer by expanding genetically based clinical cancer trials, exploring fundamental aspects of cancer biology, and establishing a national “cancer knowledge network” that will generate and share new knowledge to fuel scientific discovery and guide treatment decisions.
  • Creation of a voluntary national research cohort: NIH, in collaboration with other agencies and stakeholders, will launch a national, patient-powered research cohort of one million or more Americans who volunteer to participate in research.  Participants will be involved in the design of the Initiative and will have the opportunity to contribute diverse sources of data—including medical records; profiles of the patient’s genes, metabolites (chemical makeup), and microorganisms in and on the body; environmental and lifestyle data; patient-generated information; and personal device and sensor data.  Privacy will be rigorously protected.  This ambitious project will leverage existing research and clinical networks and build on innovative research models that enable patients to be active participants and partners.  The cohort will be broadly accessible to qualified researchers and will have the potential to inspire scientists from multiple disciplines to join the effort and apply their creative thinking to generate new insights. The ONC will develop interoperability standards and requirements to ensure secure data exchange with patients’ consent, to empower patients and clinicians and advance individual, community, and population health.
  • Commitment to protecting privacy: To ensure from the start that this Initiative adheres to rigorous privacy protections, the White House will launch a multi-stakeholder process with HHS and other Federal agencies to solicit input from patient groups, bioethicists, privacy, and civil liberties advocates, technologists, and other experts in order to identify and address any legal and technical issues related to the privacy and security of data in the context of precision medicine.
  • Regulatory modernization: The Initiative will include reviewing the current regulatory landscape to determine whether changes are needed to support the development of this new research and care model, including its critical privacy and participant protection framework.  As part of this effort, the FDA will develop a new approach for evaluating Next Generation Sequencing technologies — tests that rapidly sequence large segments of a person’s DNA, or even their entire genome. The new approach will facilitate the generation of knowledge about which genetic changes are important to patient care and foster innovation in genetic sequencing technology, while ensuring that the tests are accurate and reliable.
  • Public-private partnerships: The Obama Administration will forge strong partnerships with existing research cohorts, patient groups, and the private sector to develop the infrastructure that will be needed to expand cancer genomics, and to launch a voluntary million-person cohort.  The Administration will call on academic medical centers, researchers, foundations, privacy experts, medical ethicists, and medical product innovators to lay the foundation for this effort, including developing new approaches to patient participation and empowerment.  The Administration will carefully consider and develop an approach to precision medicine, including appropriate regulatory frameworks, that ensures consumers have access to their own health data – and to the applications and services that can safely and accurately analyze it – so that in addition to treating disease, we can empower individuals and families to invest in and manage their health.”

(More).

How Network Science Is Changing Our Understanding of Law

Curated on Posted on by Stefaan Verhulst

Emerging Technology From the arXiv: “One of the more fascinating areas of science that has emerged in recent years is the study of networks and their application to everyday life. It turns out that many important properties of our world are governed by networks with very specific properties.
These networks are not random by any means. Instead, they are often connected in the now famous small world pattern in which any part of the network can be reached in a relatively small number of steps. These kinds of networks lie behind many natural phenomena such as earthquakes, epidemics and forest fires and are equally ubiquitous in social phenomena such as the spread of fashions, languages, and even wars.
So it should come as no surprise that the same kind of network should exist in the legal world. Today, Marios Koniaris and pals at the National Technical University of Athens in Greece show that the network of links between laws follows exactly the same pattern. They say their network approach provides a unique insight into the nature of the law, the way it has emerged and how changes may influence it in the future.
The work of Koniaris and co focuses entirely on the law associated with the European Union. They begin by pointing out that this legal network is different from many other types of networks in two important ways….
The network can also be using for visualizing the nature of the legal world. It reveals clusters and related connections and can help legislators determine the effect of proposed changes…..It also shows how network science is spreading to every corner of scientific and social research.
Ref:  arxiv.org/abs/1501.05237 : Network Analysis In The Legal Domain: A Complex Model For European Union Legal Sources”

The new scientific revolution: Reproducibility at last

Curated on Posted on by Stefaan Verhulst

Joel Achenbach in the Washington Post:”…Reproducibility is a core scientific principle. A result that can’t be reproduced is not necessarily erroneous: Perhaps there were simply variables in the experiment that no one detected or accounted for. Still, science sets high standards for itself, and if experimental results can’t be reproduced, it’s hard to know what to make of them.
“The whole point of science, the way we know something, is not that I trust Isaac Newton because I think he was a great guy. The whole point is that I can do it myself,” said Brian Nosek, the founder of a start-up in Charlottesville, Va., called the Center for Open Science. “Show me the data, show me the process, show me the method, and then if I want to, I can reproduce it.”
The reproducibility issue is closely associated with a Greek researcher, John Ioannidis, who published a paper in 2005 with the startling title “Why Most Published Research Findings Are False.”
Ioannidis, now at Stanford, has started a program to help researchers improve the reliability of their experiments. He said the surge of interest in reproducibility was in part a reflection of the explosive growth of science around the world. The Internet is a factor, too: It’s easier for researchers to see what everyone else is doing….
Errors can potentially emerge from a practice called “data dredging”: When an initial hypothesis doesn’t pan out, the researcher will scan the data for something that looks like a story. The researcher will see a bump in the data and think it’s significant, but the next researcher to come along won’t see it — because the bump was a statistical fluke….
So far about 7,000 people are using that service, and the center has received commitments for $14 million in grants, with partners that include the National Science Foundation and the National Institutes of Health, Nosek said.
Another COS initiative will help researchers register their experiments in advance, telling the world exactly what they plan to do, what questions they will ask. This would avoid the data-dredging maneuver in which researchers who are disappointed go on a deep dive for something publishable.
Nosek and other reformers talk about “publication bias.” Positive results get reported, negative results ignored. Someone reading a journal article may never know about all the similar experiments that came to naught….(More).”

Citizen Science in America’s DNA

Curated on Posted on by Stefaan Verhulst

Keynote by NOAA Chief Scientist, Dr. Richard Spinrad at the forum  entitled, Tracking a Changing Climate: “Citizen science is part of America’s DNA.  For centuries, citizens not trained in science have helped shaped our understanding of Earth.
Thomas Jefferson turned Lewis and Clark into citizen scientists when he asked them to explore the landscape, wildlife and weather during their journeys of the West.They investigated plants, animals and geography, and came back with maps, sketches and journals.  These new data were some of the first pieces of environmental intelligence defining our young nation.  President Jefferson instilled citizen science in my own agency’s DNA by creating the Survey of the Coast, a NOAA legacy agency focused on charting  and protecting the entire coast of our Nation.
The National Weather Service’s Cooperative Observer Program, begun in 1890, is an outstanding example of citizen science.  Last year, NOAA honored an observer who has provided weather observations every day for 80 years. Volunteer citizen scientists have transcribed more than 68,000 pages of Arctic ship logs, adding to the long-term climate record by populating a database with historic weather and sea ice observations. Also, citizen scientists are providing new estimates of cyclone intensity by interpreting satellite images.
There is tremendous value in the capability of citizen scientists to feed local data into their own communities’ forecasts. In September 2013, for example, formal observation systems and tracking instruments were washed out when extreme floods struck Colorado and New Mexico. By ensuring that real-time forecasts were still integrated into the National Weather Service Flood Warning System, the reports of about 200 citizen scientists contributed to what has been called the best mapped extreme rain event in Colorado history and possibly nationwide.
The Community Collaborative Rain, Hail and Snow (CoCoRaHS) Network played a pivotal role in this mapping. CoCoRaHS also shows how citizen science can help make data collection straightforward and inexpensive. To measure the impact and size of hail, for example, it uses a Styrofoam sheet covered with tin foil, creating a “hail pad” that has proven to be quite accurate.
The recognized value of citizen science is growing rapidly.  NOAA has an app to crowdsource real-time precipitation data. If you feel a raindrop, or spot a snowflake, report it through NOAA’s mPING app. Precipitation reports have already topped 600,000, and the National Weather Service uses them to fine-tune forecasts…(More).”

Mapping the Nation: Building a More Resilient Future

Curated on Posted on by Stefaan Verhulst

New book from Esri: “The fifth book in Esri’s Mapping the Nation series, Mapping the Nation: Building a More Resilient Future is a collection of geographic information system (GIS) maps that illustrate how federal government agencies rely on GIS analysis to build stronger, more resilient communities and help make the world a better place.
The print version of the book includes 118 full-color maps produced by more than 50 federal government agencies, including the US Forest Service, US Department of Defense, US Department of Education, and the Bureau of Ocean Energy Management. The digital version of Mapping the Nation offers enhanced and interactive maps and videos showcasing four start-up companies that are using ArcGIS technology in partnership with Esri and the government.
The maps depict how federal employees and officials use GIS to evaluate, plan, and respond to social, economic, and environmental concerns at local, regional, national, and global levels. Topics such as green government, economic recovery and sustainability, and climate protection show how government agencies use GIS to facilitate initiatives, improve transparency, and deliver strong business models…
Mapping and Apping the Nation 2015, an interactive digital adaptation of the printed map book, is available free of charge from the Esri Books app on Apple iTunes and the Google Play store.”

The Cobweb: Can the Internet be archived?

Curated on Posted on by Stefaan Verhulst

in The New Yorker: “….The average life of a Web page is about a hundred days. ….Web pages don’t have to be deliberately deleted to disappear. Sites hosted by corporations tend to die with their hosts. When MySpace, GeoCities, and Friendster were reconfigured or sold, millions of accounts vanished. …
The Web dwells in a never-ending present. It is—elementally—ethereal, ephemeral, unstable, and unreliable. Sometimes when you try to visit a Web page what you see is an error message: “Page Not Found.” This is known as “link rot,” and it’s a drag, but it’s better than the alternative. More often, you see an updated Web page; most likely the original has been overwritten. (To overwrite, in computing, means to destroy old data by storing new data in their place; overwriting is an artifact of an era when computer storage was very expensive.) Or maybe the page has been moved and something else is where it used to be. This is known as “content drift,” and it’s more pernicious than an error message, because it’s impossible to tell that what you’re seeing isn’t what you went to look for: the overwriting, erasure, or moving of the original is invisible. For the law and for the courts, link rot and content drift, which are collectively known as “reference rot,” have been disastrous. In providing evidence, legal scholars, lawyers, and judges often cite Web pages in their footnotes; they expect that evidence to remain where they found it as their proof, the way that evidence on paper—in court records and books and law journals—remains where they found it, in libraries and courthouses. But a 2013 survey of law- and policy-related publications found that, at the end of six years, nearly fifty per cent of the URLs cited in those publications no longer worked. According to a 2014 study conducted at Harvard Law School, “more than 70% of the URLs within the Harvard Law Review and other journals, and 50% of the URLs within United States Supreme Court opinions, do not link to the originally cited information.” The overwriting, drifting, and rotting of the Web is no less catastrophic for engineers, scientists, and doctors. Last month, a team of digital library researchers based at Los Alamos National Laboratory reported the results of an exacting study of three and a half million scholarly articles published in science, technology, and medical journals between 1997 and 2012: one in five links provided in the notes suffers from reference rot. It’s like trying to stand on quicksand.
The footnote, a landmark in the history of civilization, took centuries to invent and to spread. It has taken mere years nearly to destroy. A footnote used to say, “Here is how I know this and where I found it.” A footnote that’s a link says, “Here is what I used to know and where I once found it, but chances are it’s not there anymore.” It doesn’t matter whether footnotes are your stock-in-trade. Everybody’s in a pinch. Citing a Web page as the source for something you know—using a URL as evidence—is ubiquitous. Many people find themselves doing it three or four times before breakfast and five times more before lunch. What happens when your evidence vanishes by dinnertime?… (More)”.

Would Athenian-style democracy work in the UK today?

Curated on Posted on by Stefaan Verhulst

Paul Cartledge at the BBC, in the context of BBC Democracy Day: “…The -kratia component of demo-kratia was derived from kratos, which meant unambiguously and unambivalently power or strength. Demos, the other component, meant “people” – but which people, precisely?
At one extreme it could be taken to mean all the people – that is, all the politically empowered people, the adult male citizenry as a whole. At the other ideological pole, it referred to only a section of the citizen people, the largest, namely the majority of poor citizens – those who had to work for a living and might be in greater or less penury.
Against these masses were counterposed the elite citizens – the (more or less) wealthy Few. For them, and it may well have been they who coined the word demokratia, the demos in the class sense meant the great unwashed, the stupid, ignorant, uneducated majority.
So, depending where you stood on the social spectrum, demokratia was either Abe Lincoln’s government of, by and for the people, or the dictatorship of the proletariat. This complicates, at least, any thought-experiment such as the one I’m about to conduct here.
However, what really stands in the way is a more symbolic than pragmatic objection – education, education, education.
For all that we have a formal and universally compulsory educational system, we are not educated either formally or informally to be citizens in the strong, active and participatory senses. The ancient Athenians lacked any sort of formal educational system whatsoever – though somehow or other most of them learned to read and write and count.
On the other hand, what they did possess in spades was an abundance of communal institutions, both formal and informal, both peaceful and warlike, both sacred and secular, whereby ideas of democratic citizenship could be disseminated, inculcated, internalised, and above all practised universally.
Annual, monthly and daily religious festivals. Annual drama festivals that were also themselves religious. Multiple experiences of direct participation in politics at both the local (village, parish, ward) and the “national” levels. And fighting as and for the Athenians both on land and at sea, against enemies both Greek and non-Greek (especially Persian).
Formal Athenian democratic politics, moreover, drew no such modern distinctions between the executive, legislative and judicial branches or functions of government as are enshrined in modern democratic constitutions. One ruled, as a democratic citizen, in all relevant branches equally. A trial for alleged impiety was properly speaking a political trial, as Socrates discovered to his cost.
In short, ancient Athenian democracy was very far from our liberal democracy. I don’t think I need to bang on about its conscientious exclusion of the female half of the citizenry, or its basis in a radical form of dehumanised personal slavery.
So why should we even think of wanting to apply any lesson or precedent drawn from it to our democracy today or in the future? One very good reason is the so-called “democratic deficit”, the attenuation or etiolation of what it means to be, or function fully as, a democratic citizen….(More)”

Open Data Barometer (second edition)

Curated on Posted on by Stefaan Verhulst
The second edition of the Open Data Barometer: “A global movement to make government “open by default” picked up steam in 2013 when the G8 leaders signed an Open Data Charter – promising to make public sector data openly available, without charge and in re-useable formats. In 2014 the G20 largest industrial economies followed up by pledging to advance open data as a tool against corruption, and the UN recognized the need for a “Data Revolution” to achieve global development goals.
However, this second edition of the Open Data Barometer shows that there is still a long way to go to put the power of data in the hands of citizens. Core data on how governments are spending our money and how public services are performing remains inaccessible or paywalled in most countries. Information critical to fight corruption and promote fair competition, such as company registers, public sector contracts, and land titles, is even harder to get. In most countries, proactive disclosure of government data is not mandated in law or policy as part of a wider right to information, and privacy protections are weak or uncertain.
Our research suggests some of the key steps needed to ensure the “Data Revolution” will lead to a genuine revolution in the transparency and performance of governments:

  • High-level political commitment to proactive disclosure of public sector data, particularly the data most critical to accountability
  • Sustained investment in supporting and training a broad cross-section of civil society and entrepreneurs to understand and use data effectively
  • Contextualizing open data tools and approaches to local needs, for example by making data visually accessible in countries with lower literacy levels.
  • Support for city-level open data initiatives as a complement to national-level programmes
  • Legal reform to ensure that guarantees of the right to information and the right to privacy underpin open data initiatives

Over the next six months, world leaders have several opportunities to agree these steps, starting with the United Nation’s high-level data revolution in Africa conference in March, Canada’s global International Open Data Conference in May and the G7 summit in Germany this June. It is crucial that these gatherings result in concrete actions to address the political and resource barriers that threaten to stall open data efforts….(More)”.

Federal Leaders Digital Insight Study

Curated on Posted on by Stefaan Verhulst

New report by the National Academy of Public Administration: “The Federal Leaders Digital Insight Study, conducted by the National Academy of Public Administration (the Academy) in collaboration with ICF, is the inaugural report designed to survey Federal Leaders’ perspectives about the pace with which the government is adopting, applying, and leveraging technological advancements in service to its constituencies.
The study found that Federal Leaders believe the government is reaping benefits from having adopted technology and that technology helps agencies achieve their missions. Further, Federal Leaders want the government to continue investing in technology as it evolves, yet they are concerned that the government cannot keep pace either in procuring rapidly changing digital technology or with the private sector’s use of it….Infographic—Federal Leaders Digital Insight Study: Key Findings

“