Why you should donate your data (as well as your organs) when you die

Curated on Posted on by Stefaan Verhulst

David Martin Shaw, J. Valérie Grossand Thomas C. Erren in The Conversation: “Most people are aware they can donate their organs when they die. Doing so is very important: Each deceased donor can save several lives if he donates his organs and tissue and they are used for transplantation. Support for organ donation among members of the public is very high – at over 80 percent in some countries, even if many people have not yet gotten around to registering as an organ donor.

But organs aren’t the only thing that you can donate once you’re dead. What about donating your medical data?

Data might not seem important in the way that organs are. People need organs just to stay alive, or to avoid being on dialysis for several hours a day. But medical data are also very valuable – even if they are not going to save someone’s life immediately. Why? Because medical research cannot take place without medical data, and the sad fact is that most people’s medical data are inaccessible for research once they are dead.

For example, working in shifts can be disruptive to one’s circadian rhythms. This is now thought by some to probably cause cancer. A large cohort study involving tens or hundreds of thousands of individuals could help us to investigate different aspects of shift work, including chronobiology, sleep impairment, cancer biology and premature aging. The results of such research could be very important for cancer prevention. However, any such study could currently be hamstrung by the inability to access and analyze participants’ data after they die.

Data rights

While alive, people have certain rights that allow them to control what happens to data concerning them. For example, you can control whether your phone number and address are publicly available, request copies of data held on you by any public bodies and control what Facebook displays about you. When you are dead you will no longer be able to do any of these things, and control of your digital identity after death is a controversial topic. For example, families often cannot access deceased relative’s iTunes purchases, or access the dead person’s Facebook page to indicate that he or she is now deceased.

When it comes to medical records, things become even more complicated. While alive, many people give their consent to participate in medical research, whether it’s a clinical trial of a new drug or a longitudinal study based on medical records. Without their informed consent, such research cannot normally take place. Medical confidentiality is rightly regarded as extremely important, and it can be suspended only with patient consent.

In most jurisdictions, the same applies once persons are dead – with the added problem that consent cannot be obtained from them at that point.

But it would be a serious mistake to assume that everyone wants such strict data confidentiality to persist after death. Just as in life, some people would provide their data for medical research in order to develop new treatments that could help save people’s lives…(More)”

First They Got Sick, Then They Moved Into a Virtual Utopia

Curated on Posted on by Stefaan Verhulst

Kristen French at BackChannel: “…Today, Second Life is mostly forgotten by the broader public. An estimated 800,000 users are active on a monthly basis, according to Second Life parent company Linden Lab. That’s tiny compared to the 1.86 billion users who are active on Facebook each month.

Yet some communities have quietly continued to thrive in the virtual world. One of these is the disability community, a sundry group whose members include people who are blind or deaf, people with emotional handicaps such as autism and PTSD, and people with conditions that limit their mobility, such as Parkinson’s, cerebral palsy, and multiple sclerosis. There are no official tallies of their numbers, but Wagner James Au, who has writtenextensively about Second Life, estimates they may account for roughly 20 percent of users. Some active members estimate the number higher — at as much as 50 percent.

Unlike traditional gaming, Second Life is governed by few rules. Residents can customize their avatars in an infinite number of ways. They can fly and teleport as easily as they can walk, run, and jump. They can build bespoke homes and islands almost from scratch, and buy and sell wares in virtual stores — from biker gear to bird song to the ability to swim like a mermaid. They can marry a Second Life lover, take a rocket to the moon, or simply tuck themselves into bed at night.

For many disabled residents, who may spend 12 hours a day or more in Second Life, the most important moments and relationships of their lives happen inside the virtual world. For them, the fevered fantasies of a decade ago have become reality: Second Life is where they live.

Second Life’s largest community of disabled residents is clustered on Virtual Ability Island, which is actually an archipelago of five islands — two public and three “residential,” where people can rent or buy homes. It’s the creation of a woman named Alice Krueger. In 2007, Krueger joined Second Life with a few disabled friends she knew from online chat groups.

At the time, she was becoming more isolated as her multiple sclerosis progressed. She’d lost her job, had to drop her volunteer work, and couldn’t even attend her children’s school events. Her friends had stopped coming to see her. She was 58….

As Fran and Barbara tell it, the more time Fran spent in Second Life, the younger she felt in real life. Watching her avatar hike trails and dance gave her the confidence to try things in the physical world that she hadn’t tried in a half decade — like stepping off a curb or standing up without any help. These were small victories, but they felt significant to Fran.

Fran’s story began to spread after Draxtor, a Second Life video artist, filmed a Youtube video about her. (His “World Makers” video series profiles the people behind the avatars in Second Life.) In the film, Fran recounts her experience of Second Life as a quasi-fountain of youth. It also describes the fundraising Fran and Barbara have done for Parkinson’s research through Second Life and Fran’s weekly virtual Parkinson’s support group. Suddenly Fran had a following. Some in Second Life’s disability community now use the term “Fran effect” to describe improvements in real-life functioning that they attribute to their experience in Second Life.

This is not just magical thinking. Abundant research shows imagining movement, without actually moving the body, can have positive effects on motor skills, balance, and learning. The same effects are found in athletes and people who are healthy. Researchers have even found that people who have been paralyzed by severed spinal chord can stimulate regrowth and repair by envisioning their limbs moving over and over again — though it requires great effort and takes time. Studies suggest the therapeutic benefits of virtual reality extend beyond movement disorders — to chronic pain, cognitive functioning in people with ADHD and PTSD, and social skills for people on the autism spectrum….(More)”

The light and the dark side of the use of EU funding: the results of Monithon’s civic monitoring

Curated on Posted on by Stefaan Verhulst

Report by  at Monithon (Monitoring Marathon): “…All in all, this small journey in Monithon’s civic monitoring proves at least two things.

The first is that using public data for a real accountability action is a huge effort, as well as an amusement. The data, despite being open, does not answer the universe of questions for responsible administrations, but on the contrary raises more. The novelty is that the funds we explored have reached that critical mass of transparency that allows anyone, as long as he or she is well organized and willing to study (that’s right, to study), to use the available information as a base for further research. These generally lead to the discovery of something useful also for the administrations, for example the impact of financed projects on the life of people.

The second is that, having acquired new tools, local communities are willing to work hard. You can see this in the very adult faces of the young kids that thanks to civic monitoring projects start to understand how public policies can improve their cities or guarantee more opportunities for their future. You can understand this by looking at those entities that everyday work to achieve their civic objectives and that by learning how financing works are provided with new weapons, acquire new powers and are more effective in using their energies.

Are our public administrations ready for all of this? How many of them are in turn willing to make the effort to listen, be accountable and take the necessary steps? As they say, we will find out in the next episode. In the next post we will examine the impact of civic monitoring, so whether and how the results we have seen have been used and what changes have they generated. We will report some cases with the intention of starting a good discussion. Which, of course, can already start now….(More)”

How a Political Scientist Knows What Our Enemies Will Do (Often Before They Do)

Curated on Posted on by Stefaan Verhulst

Political scientists have now added rigorous mathematical techniques to their social-science toolbox, creating methods to explain—and even predict—the actions of adversaries, thus making society safer as well as smarter. Such techniques allowed the U.S. government to predict the fall of President Ferdinand Marcos of the Philippines in 1986, helping hatch a strategy to ease him out of office and avoid political chaos in that nation. And at Los Angeles International Airport a computer system predicts the tactical calculations of criminals and terrorists, making sure that patrols and checkpoints are placed in ways that adversaries can’t exploit.

The advances in solving the puzzle of human behavior represent a dramatic turnaround for the field of political science, notes Bruce Bueno de Mesquita, a professor of politics at New York University. “In the mid-1960s, I took a statistics course,” he recalls, “and my undergraduate advisor was appalled. He told me that I was wasting my time.” It took researchers many years of patient work, putting piece after piece of the puzzle of human behavior together, to arrive at today’s new knowledge. The result has been dramatic progress in the nation’s ability to protect its interests at home and abroad.

Social scientists have not abandoned the proven tools that Bueno de Mesquita and generations of other scholars acquired as they mastered their discipline. Rather, adding the rigor of mathematical analysis has allowed them to solve more of the puzzle. Mathematical models of human behavior let social scientists assemble a picture of the previously unnoticed forces that drive behavior—forces common to all situations, operating below the emotions, drama, and history that make each conflict unique….(More)”

RideComfort: A Development of Crowdsourcing Smartphones in Measuring Train Ride Quality

Curated on Posted on by Stefaan Verhulst

Adam Azzoug and Sakdirat Kaewunruen in Frontiers in Built Environment: “Among the many million train journeys taking place every day, not all of them are being measured or monitored for ride comfort. Improving ride comfort is important for railway companies to attract more passengers to their train services. Giving passengers the ability to measure ride comfort themselves using their smartphones allows railway companies to receive instant feedback from passengers regarding the ride quality on their trains. The purpose of this development is to investigate the feasibility of using smartphones to measure vibration-based ride comfort on trains. This can be accomplished by developing a smartphone application, analyzing the data recorded by the application, and verifying the data by comparing it to data from a track inspection vehicle or an accelerometer. A literature review was undertaken to examine the commonly used standards to evaluate ride comfort, such as the BS ISO 2631-1:1997 standard and Sperling’s ride index as proposed by Sperling and Betzhold (1956). The literature review has also revealed some physical causes of ride discomfort such as vibrations induced by roughness and irregularities present at the wheel/rail interface. We are the first to use artificial neural networks to map data derived from smartphones in order to evaluate ride quality. Our work demonstrates the merits of using smartphones to measure ride comfort aboard trains and suggests recommendations for future technological improvement. Our data argue that the accelerometers found in modern smartphones are of sufficient quality to be used in evaluating ride comfort. The ride comfort levels predicted both by BS ISO 2631-1 and Sperling’s index exhibit excellent agreement…(More)”

Troopers Use ‘Big Data’ to Predict Crash Sites

Curated on Posted on by Stefaan Verhulst

Jenni Bergal at Pew Charitable Trusts: “As Tennessee Highway Patrol Sgt. Anthony Griffin patrolled an area near Murfreesboro one morning in January 2014, he gave a young woman a ticket for driving her Geo Prizm without wearing a seat belt.

About four hours later, Griffin was dispatched to help out at the scene of a major accident a few miles away. A car had veered off the road, sailed over a bridge, struck a utility pole and landed in a frozen pond. When Griffin went to question the driver, who appeared uninjured, he was shocked to find it was the same woman he had ticketed earlier.

She told him she had been wearing her seat belt only because he had given her a ticket. She believed it had saved her life. And if it hadn’t been for new crash prediction software his agency was using, Griffin said he wouldn’t have been in that spot to issue her the ticket.

“I’m in my 21st year of law enforcement and I’ve never come across anything where I could see the fruit of my work in this fashion,” said Griffin, who is now a lieutenant. “It was amazing.”

As more and more states use “big data” for everything from catching fraudsters to reducing heath care costs, some highway patrols are tapping it to predict where serious or fatal traffic accidents are likely to take place so they can try to prevent them….

Indiana State Police decided to take a different approach, and are making their predictive crash analytics program available to the public, as well as troopers.

A color-coded Daily Crash Prediction map, which went online in November, pulls together data that includes crash reports from every police agency in the state dating to 2004, daily traffic volume, historical weather information and the dates of major holidays, said First Sgt. Rob Simpson….(More)”

The Innovation-Friendly Organization

Curated on Posted on by Stefaan Verhulst

Book by Anna Simpson: “This book explores five cultural traits – Diversity, Integrity, Curiosity, Reflection, and Connection – that encourage the birth and successful development of new ideas, and shows how organizations that are serious about innovation can embrace them.

Innovation – the driver of change and resilience – It is totally dependent on culture, the social environment which shapes how ideas emerge and evolve. Ideas need to breathe, and culture determines the quality of the air. If it’s stuffy and lacks flow, then no idea, however brilliant, will live long enough to fulfil its potential.

Creating these innovation-friendly conditions is one of the key challenges facing organizations today, and one that is especially difficult for them – focused as they are on efficiency and control. Innovation, Anna Simpson argues, begins with diversity of thought and attitude: the opposite of conformity and standardisation.

Likewise, with ongoing pressures to deliver results before yesterday, how can organizations allow sufficient space for the seemingly aimless process of following interesting possibilities and pondering on the impact of various options?Anna Simpson shows how large organizations can adapt their culture to enable the exchange of different perspectives; to support each person to bring their whole self to their work; to embrace the aimlessness that fosters creative experimentation; to take the time to approach change with the care it deserves, and – lastly – to develop the collective strength needed to face the ultimate ‘sledgehammer test’….(More)”.

Embracing Innovation in Government Global Trends

Curated on Posted on by Stefaan Verhulst

Report by the OECD: “Innovation in government is about finding new ways to impact the lives of citizens, and new approaches to activating them as partners to shape the future together. It involves overcoming old structures and modes of thinking and embracing new technologies and ideas. The potential of innovation in government is immense; however, the challenges governments face are significant. Despite this, governments are transforming the way they work to ensure this potential is met….

Since 2014, the OECD Observatory of Public Sector Innovation (OPSI), an OECD Directorate for Public Governance and Territorial Development (GOV) initiative, has been working to identify the key issues for innovation in government and what can be done to achieve greater impact. To learn from governments on the leading edge of this field, OPSI has partnered with the Government of the United Arab Emirates (UAE) and its Mohammed Bin Rashid Centre for Government Innovation (MBRCGI) , as part of the Middle East and North Africa (MENA)-OECD Governance Programme, to conduct a global review of new ways in which governments are transforming their operations and improving the lives of their people, culminating in this report.

Through research and an open Call for Innovations, the review surfaces key trends, challenges, and success factors in innovation today, as well as examples and case studies to illustrate them and recommendations to help support innovation. This report is published in conjunction with the 2017 World Government Summit, which brings together over 100 countries to discuss innovative ways to solve the challenges facing humanity….(More)”

Big data may be reinforcing racial bias in the criminal justice system

Curated on Posted on by Stefaan Verhulst

Laurel Eckhouse at the Washington Post: “Big data has expanded to the criminal justice system. In Los Angeles, police use computerized “predictive policing” to anticipate crimes and allocate officers. In Fort Lauderdale, Fla., machine-learning algorithms are used to set bond amounts. In states across the country, data-driven estimates of the risk of recidivism are being used to set jail sentences.

Advocates say these data-driven tools remove human bias from the system, making it more fair as well as more effective. But even as they have become widespread, we have little information about exactly how they work. Few of the organizations producing them have released the data and algorithms they use to determine risk.

 We need to know more, because it’s clear that such systems face a fundamental problem: The data they rely on are collected by a criminal justice system in which race makes a big difference in the probability of arrest — even for people who behave identically. Inputs derived from biased policing will inevitably make black and Latino defendants look riskier than white defendants to a computer. As a result, data-driven decision-making risks exacerbating, rather than eliminating, racial bias in criminal justice.
Consider a judge tasked with making a decision about bail for two defendants, one black and one white. Our two defendants have behaved in exactly the same way prior to their arrest: They used drugs in the same amount, have committed the same traffic offenses, owned similar homes and took their two children to the same school every morning. But the criminal justice algorithms do not rely on all of a defendant’s prior actions to reach a bail assessment — just those actions for which he or she has been previously arrested and convicted. Because of racial biases in arrest and conviction rates, the black defendant is more likely to have a prior conviction than the white one, despite identical conduct. A risk assessment relying on racially compromised criminal-history data will unfairly rate the black defendant as riskier than the white defendant.

To make matters worse, risk-assessment tools typically evaluate their success in predicting a defendant’s dangerousness on rearrests — not on defendants’ overall behavior after release. If our two defendants return to the same neighborhood and continue their identical lives, the black defendant is more likely to be arrested. Thus, the tool will falsely appear to predict dangerousness effectively, because the entire process is circular: Racial disparities in arrests bias both the predictions and the justification for those predictions.

We know that a black person and a white person are not equally likely to be stopped by police: Evidence on New York’s stop-and-frisk policy, investigatory stops, vehicle searches and drug arrests show that black and Latino civilians are more likely to be stopped, searched and arrested than whites. In 2012, a white attorney spent days trying to get himself arrested in Brooklyn for carrying graffiti stencils and spray paint, a Class B misdemeanor. Even when police saw him tagging the City Hall gateposts, they sped past him, ignoring a crime for which 3,598 people were arrested by the New York Police Department the following year.

Before adopting risk-assessment tools in the judicial decision-making process, jurisdictions should demand that any tool being implemented undergo a thorough and independent peer-review process. We need more transparencyand better data to learn whether these risk assessments have disparate impacts on defendants of different races. Foundations and organizations developing risk-assessment tools should be willing to release the data used to build these tools to researchers to evaluate their techniques for internal racial bias and problems of statistical interpretation. Even better, with multiple sources of data, researchers could identify biases in data generated by the criminal justice system before the data is used to make decisions about liberty. Unfortunately, producers of risk-assessment tools — even nonprofit organizations — have not voluntarily released anonymized data and computational details to other researchers, as is now standard in quantitative social science research….(More)”.

How to Do Social Science Without Data

Curated on Posted on by Stefaan Verhulst

Neil Gross in the New York Times: With the death last month of the sociologist Zygmunt Bauman at age 91, the intellectual world lost a thinker of rare insight and range. Because his style of work was radically different from that of most social scientists in the United States today, his passing is an occasion to consider what might be gained if more members of our profession were to follow his example….

Weber saw bureaucracies as powerful, but dispiritingly impersonal. Mr. Bauman amended this: Bureaucracy can be inhuman. Bureaucratic structures had deadened the moral sense of ordinary German soldiers, he contended, which made the Holocaust possible. They could tell themselves they were just doing their job and following orders.

Later, Mr. Bauman turned his scholarly attention to the postwar and late-20th-century worlds, where the nature and role of all-encompassing institutions were again his focal point. Craving stability after the war, he argued, people had set up such institutions to direct their lives — more benign versions of Weber’s bureaucracy. You could go to work for a company at a young age and know that it would be a sheltering umbrella for you until you retired. Governments kept the peace and helped those who couldn’t help themselves. Marriages were formed through community ties and were expected to last.

But by the end of the century, under pressure from various sources, those institutions were withering. Economically, global trade had expanded, while in Europe and North America manufacturing went into decline; job security vanished. Politically, too, changes were afoot: The Cold War drew to an end, Europe integrated and politicians trimmed back the welfare state. Culturally, consumerism seemed to pervade everything. Mr. Bauman noted major shifts in love and intimacy as well, including a growing belief in the contingency of marriage and — eventually — the popularity of online dating.

In Mr. Bauman’s view, it all connected. He argued we were witnessing a transition from the “solid modernity” of the mid-20th century to the “liquid modernity” of today. Life had become freer, more fluid and a lot more risky. In principle, contemporary workers could change jobs whenever they got bored. They could relocate abroad or reinvent themselves through shopping. They could find new sexual partners with the push of a button. But there was little continuity.

Mr. Bauman considered the implications. Some thrived in this new atmosphere; the institutions and norms previously in place could be stultifying, oppressive. But could a transient work force come together to fight for a more equitable distribution of resources? Could shopping-obsessed consumers return to the task of being responsible, engaged citizens? Could intimate partners motivated by short-term desire ever learn the value of commitment?…(More)”