Data in public health

Curated on Posted on by Stefaan Verhulst

Jeremy Berg in Science: “In 1854, physician John Snow helped curtail a cholera outbreak in a London neighborhood by mapping cases and identifying a central public water pump as the potential source. This event is considered by many to represent the founding of modern epidemiology. Data and analysis play an increasingly important role in public health today. This can be illustrated by examining the rise in the prevalence of autism spectrum disorders (ASDs), where data from varied sources highlight potential factors while ruling out others, such as childhood vaccines, facilitating wise policy choices…. A collaboration between the research community, a patient advocacy group, and a technology company (www.mss.ng) seeks to sequence the genomes of 10,000 well-phenotyped individuals from families affected by ASD, making the data freely available to researchers. Studies to date have confirmed that the genetics of autism are extremely complicated—a small number of genomic variations are closely associated with ASD, but many other variations have much lower predictive power. More than half of siblings, each of whom has ASD, have different ASD-associated variations. Future studies, facilitated by an open data approach, will no doubt help advance our understanding of this complex disorder….

A new data collection strategy was reported in 2013 to examine contagious diseases across the United States, including the impact of vaccines. Researchers digitized all available city and state notifiable disease data from 1888 to 2011, mostly from hard-copy sources. Information corresponding to nearly 88 million cases has been stored in a database that is open to interested parties without restriction (www.tycho.pitt.edu). Analyses of these data revealed that vaccine development and systematic vaccination programs have led to dramatic reductions in the number of cases. Overall, it is estimated that ∼100 million cases of serious childhood diseases have been prevented through these vaccination programs.

These examples illustrate how data collection and sharing through publication and other innovative means can drive research progress on major public health challenges. Such evidence, particularly on large populations, can help researchers and policy-makers move beyond anecdotes—which can be personally compelling, but often misleading—for the good of individuals and society….(More)”

DataRefuge

Curated on Posted on by Stefaan Verhulst

“DataRefuge is a public, collaborative project designed to address the following concerns about federal climate and environmental data:

  • What are the best ways to safeguard data?
  • How do federal agencies play crucial roles in data collection, management, and distribution?
  • How do government priorities impact data’s accessibility?
  • Which projects and research fields depend on federal data?
  • Which data sets are of value to research and local communities, and why?

DataRefuge is also an initiative committed to identifying, assessing, prioritizing, securing, and distributing reliable copies of federal climate and environmental data so that it remains available to researchers. Data collected as part of the #DataRefuge initiative will be stored in multiple, trusted locations to help ensure continued accessibility.

DataRefuge acknowledges–and in fact draws attention to–the fact that there are no guarantees of perfectly safe information. But there are ways that we can create safe and trustworthy copies. DataRefuge is thus also a project to develop the best methods, practices, and protocols to do so.

DataRefuge depends on local communities. We welcome new collaborators who want to organize DataRescue Events or build DataRefuge in other ways.

There are many ways to be involved with building DataRefuge. They’re not mutually exclusive!…(More)”

Mapping open data governance models: Who makes decisions about government data and how?

Curated on Posted on by Stefaan Verhulst

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)”

The chaos of South Africa’s taxi system is being tackled with open data

Curated on Posted on by Stefaan Verhulst

Lynsey Chutel at Quartz: “On any given day in South Africa’s cities the daily commute can be chaotic and unpredictable. A new open source data platform hopes to bring some order to that—or at least help others get it right.

Contributing to that chaos is a formal public transportation system that is inadequate for a growing urban population and an informal transportation network that whizzes through the streets unregulated. Where Is My Transport has done something unique by finally bringing these two systems together on one map.

Where Is My Transport has mapped Cape Town’s transport systems to create an integrated system, incorporating train, bus and minibus taxi routes. This last one is especially difficult, because the thousands of minibuses that ferry most South Africans are notoriously difficult to pin down.

Minibus taxis seat about 15 people and turn any corner into a bus stop, often halting traffic. They travel within neighborhoods and across the country and are the most affordable means of transport for the majority of South Africans. But they are also often unsafe vehicles, at times involved in horrific road accidents.

Devin De Vries, one of the platform’s co-founders, says he was inspired by the Digital Matatus project in Nairobi. The South African platform differs, however, in that it provides open source information for others who think they may have a solution to South Africa’s troubled public transportation system.

“Transport is a complex ecosystem, and we don’t think any one company will solve it, De Vries told Quartz. “That’s why we made our platform open and hope that many endpoints—apps, websites, et cetera—will draw on the data so people can access it.”

This could lead to trip planning apps like Moovit or Transit for African commuters, or help cities better map their public transportation system, De Vries hopes…(More)”

State of Open Corporate Data: Wins and Challenges Ahead

Curated on Posted on by Stefaan Verhulst

Sunlight Foundation: “For many people working to open data and reduce corruption, the past year could be summed up in two words: “Panama Papers.” The transcontinental investigation by a team from International Center of Investigative Journalists (ICIJ) blew open the murky world of offshore company registration. It put corporate transparency high on the agenda of countries all around the world and helped lead to some notable advances in access to official company register data….

While most companies are created and operated for legitimate economic activity,  there is a small percentage that aren’t. Entities involved in corruption, money laundering, fraud and tax evasion frequently use such companies as vehicles for their criminal activity. “The Idiot’s Guide to Money Laundering from Global Witness” shows how easy it is to use layer after layer of shell companies to hide the identity of the person who controls and benefits from the activities of the network. The World Bank’s “Puppet Masters” report found that over 70% of grand corruption cases, in fact, involved the use of offshore vehicles.

For years, OpenCorporates has advocated for company information to be in the public domain as open data, so it is usable and comparable.  It was the public reaction to Panama Papers, however, that made it clear that due diligence requires global data sets and beneficial registries are key for integrity and progress.

The call for accountability and action was clear from the aftermath of the leak. ICIJ, the journalists involved and advocates have called for tougher action on prosecutions and more transparency measures: open corporate registers and beneficial ownership registers. A series of workshops organized by the B20 showed that business also needed public beneficial ownership registers….

Last year the UK became the first country in the world to collect and publish who controls and benefits from companies in a structured format, and as open data. Just a few days later, we were able to add the information in OpenCorporates. The UK data, therefore, is one of a kind, and has been highly anticipated by transparency skeptics and advocates advocates alike. So fa,r things are looking good. 15 other countries have committed to having a public beneficial ownership register including Nigeria, Afghanistan, Germany, Indonesia, New Zealand and Norway. Denmark has announced its first public beneficial ownership data will be published in June 2017. It’s likely to be open data.

This progress isn’t limited to beneficial ownership. It is also being seen in the opening up of corporate registers . These are what OpenCorporates calls “core company data”. In 2016, more countries started releasing company register as open data, including Japan, with over 4.4 million companies, Israel, Virginia, Slovenia, Texas, Singapore and Bulgaria. We’ve also had a great start to 2017 , with France publishing their central company database as open data on January 5th.

As more states have embracing open data, the USA jumped from average score of 19/100 to 30/100. Singapore rose from 0 to 20. The Slovak Republic from 20 to 40. Bulgaria wet from 35 to 90.  Japan rose from 0 to 70 — the biggest increase of the year….(More)”

Data ideologies of an interested public: A study of grassroots open government data intermediaries

Curated on Posted on by Stefaan Verhulst

Andrew Schrock and Gwen Shaffer in Big Data & Society: “Government officials claim open data can improve internal and external communication and collaboration. These promises hinge on “data intermediaries”: extra-institutional actors that obtain, use, and translate data for the public. However, we know little about why these individuals might regard open data as a site of civic participation. In response, we draw on Ilana Gershon to conceptualize culturally situated and socially constructed perspectives on data, or “data ideologies.” This study employs mixed methodologies to examine why members of the public hold particular data ideologies and how they vary. In late 2015 the authors engaged the public through a commission in a diverse city of approximately 500,000. Qualitative data was collected from three public focus groups with residents. Simultaneously, we obtained quantitative data from surveys. Participants’ data ideologies varied based on how they perceived data to be useful for collaboration, tasks, and translations. Bucking the “geek” stereotype, only a minority of those surveyed (20%) were professional software developers or engineers. Although only a nascent movement, we argue open data intermediaries have important roles to play in a new political landscape….(More)”

‘Access Map’

Curated on Posted on by Stefaan Verhulst

Lisa Stiffler at GeekWire: “Waze, HERE, Apple Maps, Google Maps. The list of sites and apps to help you navigate the fastest driving route keeps growing. If you’re hoofing it, however, you’ve largely been on your own to figure out a safe and speedy pedestrian path.

But now walkers are starting to catch up to cars in the realm of mapping apps thanks to the University of Washington’s Taskar Center for Accessible Technology.

The group today is releasing an online tool called Access Map that will allow Seattle pedestrians to enter addresses and generate customized walking directions. Users can request maps that include only routes with sidewalks with sloped “curb cuts” that allow strollers and wheelchairs to easily pass, and that bypass construction sites and exclude the steepest streets.

The UW researchers are additionally creating tools to help other cities and communities build their own maps. They’re also working on a project with Seattle Public Schools to help families crowdsource and discover safer routes for kids walking to school….

In an attempt to make it easier for others to follow in their footsteps, the UW researchers recently launched their OpenSidewalks project, which will create a set of standards for mapping pedestrian routes….(More)”

Information for accountability: Transparency and citizen engagement for improved service delivery in education systems

Curated on Posted on by Stefaan Verhulst

Lindsay Read and Tamar Manuelyan Atinc at Brookings: “There is a wide consensus among policymakers and practitioners that while access to education has improved significantly for many children in low- and middle-income countries, learning has not kept pace. A large amount of research that has attempted to pinpoint the reasons behind this quality deficit in education has revealed that providing extra resources such as textbooks, learning materials, and infrastructure is largely ineffective in improving learning outcomes at the system level without accompanying changes to the underlying structures of education service delivery and associated systems of accountability.

Information is a key building block of a wide range of strategies that attempts to tackle weaknesses in service delivery and accountability at the school level, even where political systems disappoint at the national level. The dissemination of more and better quality information is expected to empower parents and communities to make better decisions in terms of their children’s schooling and to put pressure on school administrators and public officials for making changes that improve learning and learning environments. This theory of change underpins both social accountability and open data initiatives, which are designed to use information to enhance accountability and thereby influence education delivery.

This report seeks to extract insight into the nuanced relationship between information and accountability, drawing upon a vast literature on bottom-up efforts to improve service delivery, increase citizen engagement, and promote transparency, as well as case studies in Australia, Moldova, Pakistan, and the Philippines. In an effort to clarify processes and mechanisms behind information-based reforms in the education sector, this report also categorizes and evaluates recent impact evaluations according to the intensity of interventions and their target change agents—parents, teachers, school principals, and local officials. The idea here is not just to help clarify what works but why reforms work (or do not)….(More)”

Open-Sourcing Google Earth Enterprise

Curated on Posted on by Stefaan Verhulst

Geo Developers Blog: “We are excited to announce that we are open-sourcing Google Earth Enterprise (GEE), the enterprise product that allows developers to build and host their own private maps and 3D globes. With this release, GEE Fusion, GEE Server, and GEE Portable Server source code (all 470,000+ lines!) will be published on GitHub under the Apache2 license in March.

Originally launched in 2006, Google Earth Enterprise provides customers the ability to build and host private, on-premise versions of Google Earth and Google Maps. In March 2015, we announced the deprecation of the product and the end of all sales. To provide ample time for customers to transition, we have provided a two year maintenance period ending on March 22, 2017. During this maintenance period, product updates have been regularly shipped and technical support has been available to licensed customers….

GCP is increasingly used as a source for geospatial data. Google’s Earth Engine has made available over a petabyte of raster datasets which are readily accessible and available to the public on Google Cloud Storage. Additionally, Google uses Cloud Storage to provide data to customers who purchase Google Imagerytoday. Having access to massive amounts of geospatial data, on the same platform as your flexible compute and storage, makes generating high quality Google Earth Enterprise Databases and Portables easier and faster than ever.

We will be sharing a series of white papers and other technical resources to make it as frictionless as possible to get open source GEE up and running on Google Cloud Platform. We are excited about the possibilities that open-sourcing enables, and we trust this is good news for our community. We will be sharing more information when we launch the code in March on GitHub. For general product information, visit the Google Earth Enterprise Help Center. Review the essential and advanced training for how to use Google Earth Enterprise, or learn more about the benefits of Google Cloud Platform….(More)”

The Open Data Movement: Young Activists between Data Disclosure and Digital Reputation

Curated on Posted on by Stefaan Verhulst

Davide Arcidiacono and Giuseppe Reale in PArtecipazione e COnflitto: “Young citizens show an increasing interest for direct democracy tools and for the building of a new relationship with public administration through the use of digital platforms. The Open Data issue is part of this transformation. The paper analyzes the Open Data issue from the perspective of a spontaneous and informal group of digital activists with the aim of promoting data disclosure. The study is focused mainly on the case of a specific local movement, named Open Data Sicilia (ODS), combining traditional ethnographic observation with an ethnographic approach. The aim of the study is to detect the social profile of the Open Data movement activists, understanding how is it organized their network, what are the common purposes and solidarity models embodied by this type of movement, what are the resources mobilized and their strategies between on-line and off-line. The ODS case appears interesting for its evolution, its strategy and organizational structure: an elitist and technocratic movement that aspires to a broad constituency. It is an expressive or a reformist movement, rather than an anti-system actor, with features that are similar to a lobby. The case study also shows all the typical characteristics of digital activism, with its fluid boundaries between ethical inspiration of civic engagement and individual interests….(More)”