Stefaan Verhulst

Gabi Fitz and Lisa Brooks in Philantopic: “One of the key roles the nonprofit sector plays in civil society is providing evidence about social problems and their solutions. Given recent changes to policies regarding the sharing of knowledge and evidence by federal agencies, that function is more critical than ever.

Nonprofits deliver more than direct services such as running food banks or providing shelter to people who are homeless. They also collect and share data, evidence, and lessons learned so as to help all of us understand complex and difficult problems.

Those efforts not only serve to illuminate and benchmark our most pressing social problems, they also inform the actions we take, whether at the individual, organizational, community, or policy level. Often, they provide the evidence in “evidence-based” decision making, not to mention the knowledge that social sector organizations and policy makers rely on when shaping their programs and services and individual citizens turn to inform their own engagement.

In January 2017, several U.S. government agencies, including the Environmental Protection Agency and the Departments of Health and Human Services and Agriculture, were ordered by officials of the incoming Trump administration not to share anything that could be construed as controversial through official communication channels such as websites and social media channels. (See “Federal Agencies Told to Halt External Communications.”) Against that backdrop, the nonprofit sector’s interest in generating and sharing evidence has become more urgent than ever…..

Providing access to evidence and lessons learned is always important, but in light of recent events, we believe it’s more necessary than ever. That’s why we are asking for your help in providing — and preserving — access to this critical knowledge base.

Over the next few months, we will be updating and maintaining special collections of non-academic research on the following topics and need lead curators with issue expertise to lend us a hand. IssueLab special collections are an effort to contextualize important segments of the growing evidence base we curate, and are one of the ways we  help visitors to the platform learn about nonprofit organizations and resources that may be useful to their work and knowledge-gathering efforts.

Possible special collection topics to be updated or curated:

If you are a researcher, knowledge broker, or service provider in any of these fields of practice, please consider volunteering as a lead curator. …(More)”

Bea Schofield at Wazoku: “…RSA (Royal Society for the encouragement of Arts, Manufactures and Commerce),…start off a journey towards a more innovative, inclusive and democratic policy-making model. The first in their series of three public Challenges has launched today, with a focus on how the economy can work for everyone. RSA is calling on the public to share ideas on how we, as purchasers, can get a better deal when going about our everyday lives. This might be something as small as buying groceries at the supermarket, something more substantial, such as deciding on which phone contract to choose, or even something as significant as buying a new home.

Sitting within a wider programme addressing the lack of transparency and involvement of the public when it comes to policy-making, the RSA’s mission is to do two things:

1. Involve a broader cross-section of society in the decision-making process which will affect our livelihoods, such as our spending habits, how much tax we pay and what services we have access to.
2. Help shape a more participatory model for policy-making which is open, collaborative and innovative….(More)”.

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)”

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)”

Report by Luigi Reggi 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)”

Ana Brandusescu, Danny Lämmerhirt and Stefaan Verhulst call for a systematic and comparative investigation of the different governance models for open data policy and publication….

“An important value proposition behind open data involves increased transparency and accountability of governance. Yet little is known about how open data itself is governed. Who decides and how? How accountable are data holders to both the demand side and policy makers? How do data producers and actors assure the quality of government data? Who, if any, are data stewards within government tasked to make its data open?

Getting a better understanding of open data governance is not only important from an accountability point of view. If there is a better insight of the diversity of decision-making models and structures across countries, the implementation of common open data principles, such as those advocated by the International Open Data Charter, can be accelerated across countries.

In what follows, we seek to develop the initial contours of a research agenda on open data governance models. We start from the premise that different countries have different models to govern and administer their activities – in short, different ‘governance models’. Some countries are more devolved in their decision making, while others seek to organize “public administration” activities more centrally. These governance models clearly impact how open data is governed – providing a broad patchwork of different open data governance across the world and making it difficult to identify who the open data decision makers and data gatekeepers or stewards are within a given country.

For example, if one wants to accelerate the opening up of education data across borders, in some countries this may fall under the authority of sub-national government (such as states, provinces, territories or even cities), while in other countries education is governed by central government or implemented through public-private partnership arrangements. Similarly, transportation or water data may be privatised, while in other cases it may be the responsibility of municipal or regional government. Responsibilities are therefore often distributed across administrative levels and agencies affecting how (open) government data is produced, and published….(More)”

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.”…