The extreme poverty of data

Curated on Posted on by Stefaan Verhulst

 in the Financial Times: “As finance ministers gather this week in Washington DC they cannot but agree and commit to fighting extreme poverty. All of us must rejoice in the fact that over the past 15 years, the world has reportedly already “halved the number of poor people living on the planet”.

But none of us really knows it for sure. It could be less, it could be more. In fact, for every crucial issue related to human development, whether it is poverty, inequality, employment, environment or urbanization, there is a seminal crisis at the heart of global decision making – the crisis of poor data.

Because the challenges are huge and the resources scarce, on these issues more maybe than anywhere else, we need data, to monitor the results and adapt the strategies whenever needed. Bad data feed bad management, weak accountability, loss of resources and, of course, corruption.

It is rather bewildering that while we live in this technology-driven age, the development communities and many of our African governments are relying too much on guesswork. Our friends in the development sector and our African leaders would not dream of driving their cars or flying without instruments. But somehow they pretend they can manage and develop countries without reliable data.

The development community must admit it has a big problem. The sector is relying on dodgy data sets. Take the data on extreme poverty. The data we have are mainly extrapolations of estimates from years back – even up to a decade or more ago. For 38 out of 54 African countries, data on poverty and inequality are either out-dated or non-existent. How can we measure progress with such a shaky baseline? To make things worse we also don’t know how much countries spend on fighting poverty. Only 3 per cent of African citizens live in countries where governmental budgets and expenditures are made open, according to the Open Budget Index. We will never end extreme poverty if we don’t know who or where the poor are, or how much is being spent to help them.

Our African countries have all fought and won their political independence. They should now consider the battle for economic sovereignty, which begins with the ownership of sound and robust national data: how many citizens, living where, and how, to begin with.

There are three levels of intervention required.

First, a significant increase in resources for credible, independent, national statistical institutions. Establishing a statistical office is less eye-catching than building a hospital or school but data driven policy will ensure that more hospital and schools are delivered more effectively and efficiently. We urgently need these boring statistical offices. In 2013, out of a total aid budget of $134.8bn, a mere $280m went in support of statistics. Governments must also increase the resources they put into data.

Second, innovative means of collecting data. Mobile phones, geocoding, satellites and the civic engagement of young tech-savvy citizens to collect data can all secure rapid improvements in baseline data if harnessed.

Third, everyone must take on this challenge of the global public good dimension of high quality open data. Public registers of the ownership of companies, global standards on publishing payments and contracts in the extractives sector and a global charter for open data standards will help media and citizens to track corruption and expose mismanagement. Proposals for a new world statistics body – “Worldstat” – should be developed and implemented….(More)”

A Process Model for Crowdsourcing Design: A Case Study in Citizen Science

Curated on Posted on by Stefaan Verhulst

Chapter by Kazjon Grace et al in Design Computing and Cognition ’14: “Crowdsourcing design has been applied in various areas of graphic design, software design, and product design. This paper draws on those experiences and research in diversity, creativity and motivation to present a process model for crowdsourcing experience design. Crowdsourcing experience design for volunteer online communities serves two purposes: to increase the motivation of participants by making them stakeholders in the success of the project, and to increase the creativity of the design by increasing the diversity of expertise beyond experts in experience design. Our process model for crowdsourcing design extends the meta-design architecture, where for online communities is designed to be iteratively re-designed by its users. We describe how our model has been deployed and adapted to a citizen science project where nature preserve visitors can participate in the design of a system called NatureNet. The major contribution of this paper is a model for crowdsourcing experience design and a case study of how we have deployed it for the design and development of NatureNet….(More)”

 

The big medical data miss: challenges in establishing an open medical resource

Curated on Posted on by Stefaan Verhulst

Eric J. Topol in Nature: ” I call for an international open medical resource to provide a database for every individual’s genomic, metabolomic, microbiomic, epigenomic and clinical information. This resource is needed in order to facilitate genetic diagnoses and transform medical care.

“We are each, in effect, one-person clinical trials”

Laurie Becklund was a noted journalist who died in February 2015 at age 66 from breast cancer. Soon thereafter, the Los Angeles Times published her op-ed entitled “As I lay dying” (Ref. 1). She lamented, “We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them”. She went on to assert that, in the era of big data, the lack of such a resource is “criminal”, and she is absolutely right….

Around the same time of this important op-ed, the MIT Technology Review published their issue entitled “10 Breakthrough Technologies 2015” and on the list was the “Internet of DNA” (Ref. 2). While we are often reminded that the world we live in is becoming the “Internet of Things”, I have not seen this terminology applied to DNA before. The article on the “Internet of DNA” decried, “the unfolding calamity in genomics is that a great deal of life-saving information, though already collected, is inaccessible”. It called for a global network of millions of genomes and cited theMatchmaker Exchange as a frontrunner. For this international initiative, a growing number of research and clinical teams have come together to pool and exchange phenotypic and genotypic data for individual patients with rare disorders, in order to share this information and assist in the molecular diagnosis of individuals with rare diseases….

an Internet of DNA — or what I have referred to as a massive, open, online medicine resource (MOOM) — would help to quickly identify the genetic cause of the disorder4 and, in the process of doing so, precious guidance for prevention, if necessary, would become available for such families who are currently left in the lurch as to their risk of suddenly dying.

So why aren’t such MOOMs being assembled? ….

There has also been much discussion related to privacy concerns that patients might be unwilling to participate in a massive medical information resource. However, multiple global consumer surveys have shown that more than 80% of individuals are ready to share their medical data provided that they are anonymized and their privacy maximally assured4. Indeed, just 24 hours into Apple’s ResearchKit initiative, a smartphone-based medical research programme, there were tens of thousand of patients with Parkinson disease, asthma or heart disease who had signed on. Some individuals are even willing to be “open source” — that is, to make their genetic and clinical data fully available with free access online, without any assurance of privacy. This willingness is seen by the participants in the recently launched Open Humans initiative. Along with the Personal Genome Project, Go Viral and American Gut have joined in this initiative. Still, studies suggest that most individuals would only agree to be medical research participants if their identities would not be attainable. Unfortunately, to date, little has been done to protect individual medical privacy, for which there are both promising new data protection technological approaches4 and the need for additional governmental legislation.

This leaves us with perhaps the major obstacle that is holding back the development of MOOMs — researchers. Even with big, team science research projects culling together hundreds of investigators and institutions throughout the world, such as the Global Alliance for Genomics and Health (GA4GH), the data obtained clinically are just as Laurie Becklund asserted in her op-ed — “one-person clinical trials” (Ref. 1). While undertaking the construction of a MOOM is a huge endeavour, there is little motivation for researchers to take on this task, as this currently offers no academic credit and has no funding source. But the transformative potential of MOOMs to improve medical care is extraordinary. Rather than having the knowledge die with each of us, the time has come to take down the walls of academic medical centres and health-care systems around the world, and create a global knowledge medical resource that leverages each individual’s information to help one another…(More)”

A New Source of Data for Public Health Surveillance: Facebook Likes

Curated on Posted on by Stefaan Verhulst

Paper by Steven Gittelman et al in the Journal of Medical Internet Research: “The development of the Internet and the explosion of social media have provided many new opportunities for health surveillance. The use of the Internet for personal health and participatory health research has exploded, largely due to the availability of online resources and health care information technology applications [1–8]. These online developments, plus a demand for more timely, widely available, and cost-effective data, have led to new ways epidemiological data are collected, such as digital disease surveillance and Internet surveys [8–25]. Over the past 2 decades, Internet technology has been used to identify disease outbreaks, track the spread of infectious disease, monitor self-care practices among those with chronic conditions, and to assess, respond, and evaluate natural and artificial disasters at a population level [6,8,11,12,14,15,17,22,26–28]. Use of these modern communication tools for public health surveillance has proven to be less costly and more timely than traditional population surveillance modes (eg, mail surveys, telephone surveys, and face-to-face household surveys).

The Internet has spawned several sources of big data, such as Facebook [29], Twitter [30], Instagram [31], Tumblr [32], Google [33], and Amazon [34]. These online communication channels and market places provide a wealth of passively collected data that may be mined for purposes of public health, such as sociodemographic characteristics, lifestyle behaviors, and social and cultural constructs. Moreover, researchers have demonstrated that these digital data sources can be used to predict otherwise unavailable information, such as sociodemographic characteristics among anonymous Internet users [35–38]. For example, Goel et al [36] found no difference by demographic characteristics in the usage of social media and email. However, the frequency with which individuals accessed the Web for news, health care, and research was a predictor of gender, race/ethnicity, and educational attainment, potentially providing useful targeting information based on ethnicity and income [36]. Integrating these big data sources into the practice of public health surveillance is vital to move the field of epidemiology into the 21st century as called for in the 2012 US “Big Data Research and Development Initiative” [19,39].

Understanding how big data can be used to predict lifestyle behavior and health-related data is a step toward the use of these electronic data sources for epidemiologic needs…(More)”

Beta Release of the NETmundial Solutions Map

Curated on Posted on by Stefaan Verhulst

“…the GovLab is pleased to announce the beta release of the NETmundial Solutions Map for further public comment (from April 1 -May 1, 2015). The release is the culmination of a 6-month engagement and development strategy to ensure that the tool reflects input from a diverse set of global stakeholders. The NETmundial Solutions Map is co-developed by the GovLab and Second Rise, and is facilitated by the Internet Corporation for Assigned Names and Numbers (ICANN).

 

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The tool seeks to support innovation in global governance toward a more distributed Internet Governance approach. It is designed to enable information sharing and collaboration across Internet governance issues. It will serve as a repository of information that links issues, actors, solutions and resources, and help users understand the current landscape of Internet governance.

Today, information about internet governance is scattered and hard to find. At the same time we need more coordination and collaboration to address specific issues. The Map seeks to facilitate a more collaborative and distributed way of solving Internet governance issues by providing users with a baseline of what responses already exist and who is working on what — Stefaan Verhulst, Co-Founder and Chief of Research and Development of the GovLab.

..This beta version of the NETmundial Solutions Map seeks to explore how to map the Internet governance landscape in a useful and sustainable way. Future revisions will continue to be guided by community feedback.

To this end, we welcome your comments on the following (period runs till May 1st):

  • What do you feel works well in the map?
  • What needs improving?
  • How can the map help you in your work?
  • Would you want to be part of the next version as a content provider?”

Special Report: 50 Years of Moore’s Law

Curated on Posted on by Stefaan Verhulst

moore's law iconIEEE Spectrum: “Fifty years ago this month, Gordon Moore forecast a bright future for electronics. His ideas were later distilled into a single organizing principle—Moore’s Law—that has driven technology forward at a staggering clip. We have all benefited from this miraculous development, which has forcefully shaped our modern world.

In this special report, we find that the end won’t be sudden and apocalyptic but rather gradual and complicated. Moore’s Law truly is the gift that keeps on giving—and surprising, as well….(More)”

Bloomberg Philanthropies Launches $100 Million Data for Health Program in Developing Countries

Curated on Posted on by Stefaan Verhulst

Press Release: “Bloomberg Philanthropies, in partnership with the Australian government, is launching Data for Health, a $100 million initiative that will enable 20 low- and middle-income countries to vastly improve public health data collection.  Each year the World Health Organization estimates that 65% of all deaths worldwide – 35 million each year – go unrecorded. Millions more deaths lack a documented cause. This gap in data creates major obstacles for understanding and addressing public health problems. The Data for Health initiative seeks to provide governments, aid organizations, and public health leaders with tools and systems to better collect data – and use it to prioritize health challenges, develop policies, deploy resources, and measure success. Over the next four years, Data for Health aims to help 1.2 billion people in 20 countries across Africa, Asia, and Latin America live healthier, longer lives….

“Australia’s partnership on Data for Health coincides with the launch of innovationXchange, a new initiative to embrace exploration, experimentation, and risk through a focus on innovation,” said the Hon Julie Bishop MP, Australia’s Minister for Foreign Affairs. “Greater innovation in development assistance will allow us to do a better job of tackling the world’s most daunting problems, such as a lack of credible health data.”

In addition to improving the recording of births and deaths, Data for Health will support new mechanisms for conducting public health surveys. These surveys will monitor major risk factors for early death, including non-communicable diseases (chronic diseases that are not transmitted from person to person such as cancer and diabetes). With information from these surveys, illness caused by day-to-day behaviors such as tobacco use and poor nutrition habits can be targeted, addressed and prevented. Data for Health will take advantage of the wide-spread use of mobile phone devices in developing countries to enhance the efficiency of traditional household surveys, which are typically time-consuming and expensive…(More)”

International Statistical Agencies

Curated on Posted on by Stefaan Verhulst

Via Census/BeSpacific – International Statistical Agencies – links to data from around the world. “The U.S. Census Bureau conducts demographic, economic, and geographic studies of other countries and strengthens statistical development around the world through technical assistance, training, and software products. For over 60 years, the Census Bureau has performed international analytical work and assisted in the collection, processing, analysis, dissemination, and use of statistics with counterpart governments in over 100 countries.”

Rebooting Democracy

Curated on Posted on by Stefaan Verhulst

 John Boik, Lorenzo Fioramonti, and Gary Milante at Foreign Policy: “….The next generation of political and economic systems may look very different from the ones we know today.

Some changes along these lines are already happening. Civil society groups, cities, organizations, and government agencies have begun to experiment with a host of innovations that promote decentralization, redundancy, inclusion, and diversity. These include participatory budgeting, where residents of a city democratically choose how public monies are spent. They also include local currency systems, open-source development, open-design, open-data and open-government, public banking, “buy local” campaigns, crowdfunding, and socially responsible business models.

Such innovations are a type of churning on the edges of current systems. But in complex systems, changes at the periphery can cascade to changes at the core. Further, the speed of change is increasing. Consider the telephone, first introduced by Bell in 1876. It took about 75 years to reach adoption by 50 percent of the market. A century later the Internet did the same in about 35 years. We can expect that the next major innovations will be adopted even faster.

Following the examples of the telephone and Internet, it appears likely that the technology of new economic and political decision-making systems will first be adopted by small groups, then spread virally. Indeed, small groups, such as neighborhoods and cities, are among today’s leaders in innovation. The influence of larger bodies, such as big corporations and non-governmental organizations, is also growing steadily as nation states increasingly share their powers, willingly or not.

Changes are evident even within large corporations. Open-source software development has become the norm, for example, and companies as large as Toyota have announced plans to freely share their intellectual property.

While these innovations represent potentially important parts of new political and economic systems, they are only the tip of the iceberg. Systems engineering design could eventually integrate these and other innovations into efficient, user-friendly, scalable, and resilient whole systems. But the need for this kind of innovation is not yet universally acknowledged. In its list of 14 grand challenges for the 21st century, the U.S. National Academy of Engineering addresses many of the problems caused by poor decision making, such as climate change, but not the decision-making systems themselves. The work has only just begun.

…

The development of new options will dramatically alter how democracy is used, adjusted, and exported. Attention will shift toward groups, perhaps at the city/regional level, who wish to apply the flexible tools freely available on the Internet. Future practitioners of democracy will invest more time and resources to understand what communities want and need — helping them adapt designs to make them fit for their purpose — and to build networked systems that beneficially connect diverse groups into larger political and economic structures. In time, when the updates to next-generation political and economic near completion, we might find ourselves more fully embracing the notion “engage local, think global.”…(More)

#SocialCivics and the architecture of participation

Curated on Posted on by Stefaan Verhulst

at Radar: “It was big news recently that former Twitter executive Jason Goldman is joining the White House to head up a new office of Digital Strategy.

In his post, Jason asked for advice, posted anywhere, using the hashtag #socialcivics. I decided to do a writeup, as he asked, to share my ideas and to spark further conversation.

Briefly, Jason’s mission, on behalf of the White House, is to create new tools and processes for civic engagement, so that all of us are working more effectively together to build a nation that works for everyone, not just for the few with privileged access.

One of the key ideas I have to offer is something that years ago, in the context of open source software, I called “the architecture of participation.” I wrote:

[Open source software projects] that have built large development communities have done so because they have a modular architecture that allows easy participation by independent or loosely coordinated developers … The Web, however, took the idea of participation to a new level because it opened that participation not just to software developers, but to all users of the system.

Modularity depends on standards — formal or informal expectations about behavior and interfaces — and interoperability. To take an example that is not from software, consider that our most competitive, participatory industries all feature devices made from standardized parts. Whether you’re talking automobiles or personal computers or cell phones, a rich ecosystem of suppliers is possible only because we agreed that the threads on bolts and nuts should be a certain size, that electronic parts should be interchangeable, and that complex, custom assemblies should be kept to a minimum. Even large systems depend on small modular parts, but the fewer modular parts a system has, the more expensive it is, and generally, it can be modified and improved by far fewer people….(More)”