social media

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

Curated on February 18, 2017October 10, 2018 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 February 17, 2017May 29, 2019 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 written extensively 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)”

Organizational crowdsourcing

Curated on February 17, 2017August 20, 2018 by Stefaan Verhulst

Jeremy Morgan at Lippincott: “One of the most consequential insights from the study of organizational culture happens to have an almost irresistible grounding in basic common sense. When attempting to solve the challenges of today’s businesses, inviting a broad slice of an employee population yields more creative, actionable solutions than restricting the conversation to a small strategy or leadership team.

This recognition, that in order to uncover new business ideas and innovations, organizations must foster listening cultures and a meritocracy of best thinking, is fueling interest in organizational crowdsourcing — a discipline focused on employee connection, collaboration and ideation. Leaders at companies such as Roche, Bank of the West, Merck, Facebook and IBM, along with countless Silicon Valley companies for whom the “hackathon” is a major cultural event, have embraced employee crowdsourcing as a way to unlock organizational knowledge and promote empathy through technology.

The benefits of internal crowdsourcing are clear. First, it ensures that a company’s understanding of key change drivers and potential strategic priorities is grounded in the organization’s everyday reality and not abstract hypotheses developed by a team of strategists. Second, employees inherently believe in and want to own the implementation of ideas that they generate through crowdsourcing. These are ideas borne of the culture for the culture, and are less likely to run aground on the rocks of employee indifference….

How can this be achieved through organizational crowdsourcing?

There is no out-of-the-box solution. Each campaign has to organically surface areas of focus for further inquiries, develop a framework and set of questions to guide participation and ignite conversations, and then analyze and communicate results in a way that helps bring solutions to life. But there are some key principles that will maximize the success of any crowdsourcing effort.

Obtaining insightful and actionable answers boils down to asking the questions at just the right altitude. If they’re too high up, too broad and open-ended, the usefulness of the feedback will suffer. If the questions are too broad — “How can we make our workplace better?” — you will likely hear responses like “juice bars” and “massage therapists.” If the questions are too narrow — “What kind of lighting do we need in our conference rooms?” — you limit the opportunity of people to use their creativity. However, the answers are likely to spark a conversation if people are asked, “How can we create spaces that allow us to generate ideas more effectively?” Conversation will flow to discussion of breaking down physical barriers in office design, building social “hubs” and investing in live events that allow employees from disparate geographies to meet in person and solve problems together.

On the technology side, crowdsourcing platforms such as Jive Software and UserVoice, among others, make it easy to bring large numbers of employees together to gather, build upon and prioritize new ideas and innovation efforts, from process simplification and product development to the transformation of customer experiences. Respondents can vote on other people’s suggestions and add comments.

By facilitating targeted conversations across times zones, geographies and corporate functions, crowdsourcing makes possible a new way of listening: of harnessing an organization’s collective wisdom to achieve action by a united and inspired employee population. It’s amazing to see the thoughtfulness, precision and energy unleashed by crowdsourcing efforts. People genuinely want to contribute to their company’s success if you open the doors and let them.

Taking a page from the Silicon Valley hackathon, organizational crowdsourcing campaigns are structured as events of limited duration focused on a specific challenge or business problem….(More)”

Corporate Social Responsibility for a Data Age

Curated on February 15, 2017May 29, 2019 by Stefaan Verhulst

Stefaan G. Verhulst in the Stanford Social Innovation Review: “Proprietary data can help improve and save lives, but fully harnessing its potential will require a cultural transformation in the way companies, governments, and other organizations treat and act on data….

We live, as it is now common to point out, in an era of big data. The proliferation of apps, social media, and e-commerce platforms, as well as sensor-rich consumer devices like mobile phones, wearable devices, commercial cameras, and even cars generate zettabytes of data about the environment and about us.

Yet much of the most valuable data resides with the private sector—for example, in the form of click histories, online purchases, sensor data, and call data records. This limits its potential to benefit the public and to turn data into a social asset. Consider how data held by business could help improve policy interventions (such as better urban planning) or resiliency at a time of climate change, or help design better public services to increase food security.

Data responsibility suggests steps that organizations can take to break down these private barriers and foster so-called data collaboratives, or ways to share their proprietary data for the public good. For the private sector, data responsibility represents a new type of corporate social responsibility for the 21st century.

While Nepal’s Ncell belongs to a relatively small group of corporations that have shared their data, there are a few encouraging signs that the practice is gaining momentum. In Jakarta, for example, Twitter exchanged some of its data with researchers who used it to gather and display real-time information about massive floods. The resulting website, PetaJakarta.org, enabled better flood assessment and management processes. And in Senegal, the Data for Development project has brought together leading cellular operators to share anonymous data to identify patterns that could help improve health, agriculture, urban planning, energy, and national statistics.

Examples like this suggest that proprietary data can help improve and save lives. But to fully harness the potential of data, data holders need to fulfill at least three conditions. I call these the “the three pillars of data responsibility.”…

The difficulty of translating insights into results points to some of the larger social, political, and institutional shifts required to achieve the vision of data responsibility in the 21st century. The move from data shielding to data sharing will require that we make a cultural transformation in the way companies, governments, and other organizations treat and act on data. We must incorporate new levels of pro-activeness, and make often-unfamiliar commitments to transparency and accountability.

By way of conclusion, here are four immediate steps—essential but not exhaustive—we can take to move forward:

Data holders should issue a public commitment to data responsibility so that it becomes the default—an expected, standard behavior within organizations.
Organizations should hire data stewards to determine what and when to share, and how to protect and act on data.
We must develop a data responsibility decision tree to assess the value and risk of corporate data along the data lifecycle.
Above all, we need a data responsibility movement; it is time to demand data responsibility to ensure data improves and safeguards people’s lives…(More)”

Rules for a Flat World – Why Humans Invented Law and How to Reinvent It for a Complex Global Economy

Curated on February 13, 2017August 3, 2018 by Stefaan Verhulst

Book by Gillian Hadfield: “… picks up where New York Times columnist Thomas Friedman left off in his influential 2005 book, The World is Flat. Friedman was focused on the infrastructure of communications and technology-the new web-based platform that allows business to follow the hunt for lower costs, higher value and greater efficiency around the planet seemingly oblivious to the boundaries of nation states. Hadfield peels back this technological platform to look at the ‘structure that lies beneath’—our legal infrastructure, the platform of rules about who can do what, when and how. Often taken for granted, economic growth throughout human history has depended at least as much on the evolution of new systems of rules to support ever-more complex modes of cooperation and trade as it has on technological innovation. When Google rolled out YouTube in over one hundred countries around the globe simultaneously, for example, it faced not only the challenges of technology but also the staggering problem of how to build success in the context of a bewildering and often conflicting patchwork of nation-state-based laws and legal systems affecting every aspect of the business-contract, copyright, encryption, censorship, advertising and more. Google is not alone. A study presented at the World Economic Forum in Davos in 2011 found that for global firms, the number one challenge of the modern economy is increasing complexity, and the number one source of complexity is law. Today, even our startups, the engines of economic growth, are global from Day One.

Put simply, the law and legal methods on which we currently rely have failed to evolve along with technology. They are increasingly unable to cope with the speed, complexity, and constant border-crossing of our new globally inter-connected environment. Our current legal systems are still rooted in the politics-based nation state platform on which the industrial revolution was built. Hadfield argues that even though these systems supported fantastic growth over the past two centuries, today they are too slow, costly, cumbersome and localized to support the exponential rise in economic complexity they fostered. …

The answer to our troubles with law, however, is not the one critics usually reach for—to have less of it. Recognizing that law provides critical infrastructure for the cooperation and collaboration on which economic growth is built is the first step, Hadfield argues, to building a legal environment that does more of what we need it to do and less of what we don’t. …(More)”

Code-Dependent: Pros and Cons of the Algorithm Age

Curated on February 9, 2017May 29, 2019 by Stefaan Verhulst

Janna Anderson and Lee Rainie at PewResearch Center: “Algorithms are instructions for solving a problem or completing a task. Recipes are algorithms, as are math equations. Computer code is algorithmic. The internet runs on algorithms and all online searching is accomplished through them. Email knows where to go thanks to algorithms. Smartphone apps are nothing but algorithms. Computer and video games are algorithmic storytelling. Online dating and book-recommendation and travel websites would not function without algorithms. GPS mapping systems get people from point A to point B via algorithms. Artificial intelligence (AI) is naught but algorithms. The material people see on social media is brought to them by algorithms. In fact, everything people see and do on the web is a product of algorithms. Every time someone sorts a column in a spreadsheet, algorithms are at play, and most financial transactions today are accomplished by algorithms. Algorithms help gadgets respond to voice commands, recognize faces, sort photos and build and drive cars. Hacking, cyberattacks and cryptographic code-breaking exploit algorithms. Self-learning and self-programming algorithms are now emerging, so it is possible that in the future algorithms will write many if not most algorithms.

Algorithms are often elegant and incredibly useful tools used to accomplish tasks. They are mostly invisible aids, augmenting human lives in increasingly incredible ways. However, sometimes the application of algorithms created with good intentions leads to unintended consequences. Recent news items tie to these concerns:

The British pound dropped 6.1% in value in seconds on Oct. 7, 2016, partly because of currency trades triggered by algorithms.
Microsoft engineers created a Twitter bot named “Tay” this past spring in an attempt to chat with Millennials by responding to their prompts, but within hours it was spouting racist, sexist, Holocaust-denying tweets based on algorithms that had it “learning” how to respond to others based on what was tweeted at it.
Facebook tried to create a feature to highlight Trending Topics from around the site in people’s feeds. First, it had a team of humans edit the feature, but controversy erupted when some accused the platform of being biased against conservatives. So, Facebook then turned the job over to algorithms only to find that they could not discern real news from fake news….(More)”.

Facebook introduces a way to help your neighbors after a disaster

Curated on February 8, 2017August 3, 2018 by Stefaan Verhulst

Casey Newton at the Verge: “Last year Facebook announced Community Help, a new part of its Safety Check feature designed to connect disaster victims with Facebook users in the area who are offering their help. Now whenever Safety Check is activated, Community Help will let users find or offer food, shelter, transportation, and other forms of assistance. After testing the feature in December, Facebook is beginning to roll it out today in the United States, Canada, India, Saudi Arabia, Australia, and New Zealand.

Facebook says Community Help represents a logical next step for Safety Check, which was first announced in November 2014. Initially, each Safety Check was essentially created manually by Facebook’s team.

In November, the company announced that Safety Check would become more automated. Global crisis reporting agencies send Facebook alerts, which it then attempts to match to user posts in a geographic area. When it finds a spike in user posts, coupled with the alert, Facebook activates Safety Check. The company says employees oversee the process to prevent false positives — something it hasn’t always succeeded at doing.

In discussions with relief agencies, Facebook says it found that disaster victims were often coming to Facebook in search of help — or to offer some. In some cases, product designer Preethi Chethan says, they were pasting Facebook posts into spreadsheets to help sort them.

Community Help is designed to make post-disaster matchmaking easier. You’ll find it inside Safety Check — go there in the wake of a calamity, and after marking yourself safe you can create a post seeking or offering help. For starters, Community Help will only be available after natural disasters and accidents….(More)”.

Big data is adding a whole new dimension to public spaces – here’s how

Curated on February 8, 2017August 3, 2018 by Stefaan Verhulst

Silvio Carta at the Conversation: “Most of us encounter public spaces in our daily lives: whether it’s physical space (a sidewalk, a bench, or a road), a visual element (a panorama, a cityscape) or a mode of transport (bus, train or bike share). But over the past two decades, digital technologies such as smart phones and the internet of things are adding extra layers of information to our public spaces, and transforming the urban environment.

Traditionally, public spaces have been carefully designed by urban planners and architects, and managed by private companies or public bodies. The theory goes that people’s attention and behaviour in public spaces can be guided by the way that architects plan the built environment. Take, for example, Leicester Square in London: the layout of green areas, pathways and benches makes it clear where people are supposed to walk, sit down and look at the natural elements. The public space is a given, which people receive and use within the terms and guidelines provided.

While these ideas are still relevant today, information is now another key material in public spaces. It changes the way that people experience the city. Uber shows us the position of its closest drivers, even when they’re out of sight; route-finding apps such as Google Maps helps us to navigate through unfamiliar territory; Pokemon Go places otherworldly creatures on the pavement right before our eyes.

But we’re not just receiving information – we’re also generating it. Whether you’re “liking” something on Facebook, searching Google, shopping online, or even exchanging an email address for Wi-Fi access; all of the data created by these actions are collected, stored, managed, analysed and brokered to generate monetary value.

Data deluge

But as well as creating profits for private companies, these data provide accurate and continuous updates of how society is evolving, which can be used by governments and designers to manage and design public spaces.

Before big data, the architects designed spaces based on mere assumptions about how people were likely to use them. Success was measured by “small”, localised data methods, such as post-occupancy evaluations, where built projects are observed during their use and assessed against the designers’ original intentions, as well as fitness for purpose and performance. For the most part, the people who used public spaces did not have a say in how they were designed or managed….(More)”

Social Media and the Internet of Things towards Data-Driven Policymaking in the Arab World: Potential, Limits and Concerns

Curated on February 5, 2017August 3, 2018 by Stefaan Verhulst

Paper by Fadi Salem: “The influence of social media has continued to grow globally over the past decade. During 2016 social media played a highly influential role in what has been described as a “post truth” era in policymaking, diplomacy and political communication. For example, social media “bots” arguably played a key role in influencing public opinion globally, whether on the political or public policy levels. Such practices rely heavily on big data analytics, artificial intelligence and machine learning algorithms, not just in gathering and crunching public views and sentiments, but more so in pro-actively influencing public opinions, decisions and behaviors. Some of these government practices undermined traditional information mediums, triggered foreign policy crises, impacted political communication and disrupted established policy formulation cycles.

On the other hand, the digital revolution has expanded the horizon of possibilities for development, governance and policymaking. A new disruptive transformation is characterized by a fusion of inter-connected technologies where the digital, physical and biological worlds converge. This inter-connectivity is generating — and consuming — an enormous amount of data that is changing the ways policies are conducted, decisions are taken and day-to-day operations are carried out. Within this context, ‘big data’ applications are increasingly becoming critical elements of policymaking. Coupled with the rise of a critical mass of social media users globally, this ubiquitous connectivity and data revolution is promising major transformations in modes of governance, policymaking and citizen-government interaction.

In the Arab region, observations from public sector and decision-making organization suggest that there is limited understanding of the real potential, the limitations, and the public concerns surrounding these big data sources in the Arab region. This report contextualizes the findings in light of the socio-technical transformations taking place in the Arab region, by exploring the growth of social media and building on past editions in the series. The objective is to explore and assess multiple aspects of the ongoing digital transformation in the Arab world and highlight some of the policy implications on a regional level. More specifically, the report aims to better inform our understanding of the convergence of social media and IoT data as sources of big data and their potential impact on policymaking and governance in the region. Ultimately, in light of the availability of massive amount of data from physical objects and people, the questions tackled in the research are: What is the potential for data-driven policymaking and governance in the region? What are the limitations? And most importantly, what are the public concerns that need to be addressed by policymakers while they embark on next phase of the digital governance transformation in the region?

In the Arab region, there are already numerous experiments and applications where data from social media and the “Internet of Things” (IoT) are informing and influencing government practices as sources of big data, effectively changing how societies and governments interact. The report has two main parts. In the first part, we explore the questions discussed in the previous paragraphs through a regional survey spanning the 22 Arab countries. In the second part, it explores growth and usage trends of influential social media platforms across the region, including Facebook, Twitter, Linkedin and, for the first time, Instagram. The findings highlight important changes — and some stagnation — in the ways social media is infiltrating demographic layers in Arab societies, be it gender, age and language. Together, the findings provide important insights for guiding policymakers, business leaders and development efforts. More specifically, these findings can contribute to shaping directions and informing decisions on the future of governance and development in the Arab region….(More)”

79 countries

Streetlight Effect

(stritlaɪt ɪˈfɛkt)

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