Country and Region: Global

Cancer Research Orgs Release Big Data for Precision Medicine

Curated on Posted on by Stefaan Verhulst

 at HealthITAnalytics: “The American Association for Cancer Research (AACR) is releasing more than 19,000 de-identified genomic records to further the international research community’s explorations into precision medicine.

The big data dump, which includes information on 59 major types of cancer, including breast, colorectal, and lung cancer, is a result of the AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE) initiative, and includes both genomic and some clinical data on consenting patients….

“These data were generated as part of routine patient care and without AACR Project GENIE they would likely never have been shared with the global cancer research community.”

Eight cancer research institutions, including five based in the United States, have contributed to the first phase of the GENIE project.  Dana-Farber Cancer Institute in Boston, Memorial Sloan Kettering Cancer Center in New York City, and the University of Texas MD Anderson Cancer Center in Houston are among the collaborators.

Alongside institutions in Paris, the Netherlands, Toronto, Nashville, and Baltimore, these organizations aim to expand the research community’s knowledge of cancer and its potential treatments by continuing to make the exchange of high-grade clinical data a top priority.

“We are committed to sharing not only the real-world data within the AACR Project GENIE registry but also our best practices, from tips about assembling an international consortium to the best variant analysis pipeline, because only by working together will information flow freely and patients benefit rapidly,” Sawyers added…

Large-scale initiatives like the AACR Project GENIE, alongside separate data collection efforts like the VA’s Million Veterans Project, the CancerLinQ platform, Geisinger Health System’s MyCode databank, and the nascent PMI Cohort, will continue to make critical genomic and clinical data available to investigators across the country and around the world…(More)”.

Inside the Digital Revolution

Curated on Posted on by Stefaan Verhulst

Heather Brooks in the Journal of International Affairs: “Technology and transparency combined to create the digital revolution, which in turn has ushered in a new form o f monitory democracy. Communicative abundance and global interconnection mean the democratic franchise can expand and deepen, but the author argues that it matters who is made transparent and for what purpose. Content and context matter. Technology and transparency can be used to strengthen democracy by opening up government to citizens, but the same tools can also be used by the state to surveil and disempower citizens, thereby damaging democracy. The author uses three case studies to discuss the impact o f digitizing information on power relations between citizens and states. First, her observations as the journalist and litigant in the legal case that forced the digitization o f UK parliamentary expense records, which when leaked created one o f the biggest political scandals in that country for decades. Second, she obtained the entire set o f U. S. diplomatic cables and reported on their contents for the Guardian. Lastly, she served as a member o f the Independent Surveillance Review Panel, set up by the UK government to investigate allegations made by Edward Snowden that the UK and U.S. governments were conducting mass surveillance programs that were potentially illegal and lacked adequate oversight. The case studies show how journalism is integral not only to identifying useful civic information but also maximizing the public good from leaked information while minimizing harm….(More)”

A Blueprint for Pro-Peace Innovation

Curated on Posted on by Stefaan Verhulst

Jason Miklian and Kristian Hoelscher for Harvard International Review (HIR): “Innovators and scholars can meaningfully collaborate to shape peaceful societies. We offer five steps they can take together.

Peace and conflict studies knowledge has expanded dramatically over the last 25 years, and we know much more about why conflicts start and how they can be prevented. At the same time, innovation and technology startups have started to try to tackle peace and conflict issues, beginning new efforts to create more peaceful societies. But innovators have thus far had little interaction with peace scholars as they try to build peace, even as many express a deep interest to positively improve the lives of those in fragile and conflict-affected regions across the globe.

While allocating tech billions for future moonshots seems commonplace, it’s much harder to get funding for projects that actively help those suffering from conflict and violence today. We contend that there is untapped value in promoting joint efforts between academics and innovators to build new violence prevention and peacebuilding tools, and being guided by state-of-the-art peace research will maximize their chances for positive societal impact. By integrating researchers’ deep knowledge of the economic, political and spatial dynamics of peace and conflict processes with innovation and entrepreneurship, we can develop new technologies that support human security and peacebuilding around the globe.

In support, we outline here several opportunities for those working in innovation spaces to become peacebuilders, and call to for innovators and scholars to dramatically increase collaboration. Highlighting the state-of-the-art innovations that are trying to build peace today, we examine select challenges that actors in this space currently face, and outline how innovator-academic partnerships can help address some of today’s most intractable global peace and conflict problems. We call for five ways to take peace innovation forward:

  1. Build the scholar–entrepreneur–policy triad of peace innovation
  2. ‘Disrupt Conflict’ – but do so with informed purpose
  3. Promote ethical innovation through culturally-sensitive engagement
  4. Make innovations that deliver specific positive impacts in conflict environments
  5. Globalize the peace-innovation playing field…(More)”

How Does Civil Society Use Budget Information? Mapping Fiscal Transparency Gaps and Needs in Developing Countries

Curated on Posted on by Stefaan Verhulst

Paolo de Renzio and Massimo Mastruzzi at International Budget Partnership (IBP): “Governments sometimes complain that the budget information they make publicly available is seldom accessed and utilized. On the other hand, civil society organizations (CSOs) often claim that the information governments make available is very difficult to understand and not detailed enough to allow for meaningful analysis and advocacy. Is there a mismatch between the budget information supplied by governments and demand among civil society?

This paper examines the “demand side” of fiscal transparency using findings from a global survey of 176 individuals working in civil society that use budget information for analysis and advocacy activities. Based on the responses, the authors identify a “fiscal transparency effectiveness gap” between the fiscal information that governments often provide and the information that CSOs need.

These findings are used to develop a set of recommendations to help governments ensure their transparency practices deliver increased citizen engagement, improved oversight, and enhanced accountability….(More)”

Global Standards in National Contexts: The Role of Transnational Multi-Stakeholder Initiatives in Public Sector Governance Reform

Curated on Posted on by Stefaan Verhulst

Paper by Brandon Brockmyer: “Multi-stakeholder initiatives (i.e., partnerships between governments, civil society, and the private sector) are an increasingly prevalent strategy promoted by multilateral, bilateral, and nongovernmental development organizations for addressing weaknesses in public sector governance. Global public sector governance MSIs seek to make national governments more transparent and accountable by setting shared standards for information disclosure and multi- stakeholder collaboration. However, research on similar interventions implemented at the national or subnational level suggests that the effectiveness of these initiatives is likely to be mediated by a variety of socio-political factors.

This dissertation examines the transnational evidence base for three global public sector governance MSIs — the Extractive Industries Transparency Initiative, the Construction Sector Transparency Initiative, and the Open Government Partnership — and investigates their implementation within and across three shared national contexts — Guatemala, the Philippines, and Tanzania — in order to determine whether and how these initiatives lead to improvements in proactive transparency (i.e., discretionary release of government data), demand-driven transparency (i.e., reforms that increase access to government information upon request), and accountability (i.e., the extent to which government officials are compelled to publicly explain their actions and/or face penalties or sanction for them), as well as the extent to which they provide participating governments with an opportunity to project a public image of transparency and accountability, while maintaining questionable practices in these areas (i.e., openwashing).

The evidence suggests that global public sector governance MSIs often facilitate gains in proactive transparency by national governments, but that improvements in demand-driven transparency and accountability remain relatively rare. Qualitative comparative analysis reveals that a combination of multi-stakeholder power sharing and civil society capacity is sufficient to drive improvements in proactive transparency, while the absence of visible, high-level political support is sufficient to impede such reforms. The lack of demand-driven transparency or accountability gains suggests that national-level coalitions forged by global MSIs are often too narrow to successfully advocate for broader improvements to public sector governance. Moreover, evidence for openwashing was found in one-third of cases, suggesting that national governments sometimes use global MSIs to deliberately mislead international observers and domestic stakeholders about their commitment to reform….(More)”

Introducing the Agricultural Open Data Package: BETA Version

Curated on Posted on by Stefaan Verhulst

PressRelease: “GODAN, Open Data for Development (OD4D) Network, Open Data Charter, and the Open Data Institute are pleased to announce the release of the Agricultural Open Data Package: BETA version. …The Agriculture Open Data Package (http://AgPack.info) has been designed to help governments get to impact with open data in the agriculture sector. This practical resource provides key policy areas, key data categories, examples datasets, relevant interoperability initiatives, and use cases that policymakers and other stakeholders in the agriculture sector or open data should focus on, in order to address food security challenges.

The Package is meant as a source of inspiration and an invitation to start a national open data for agriculture initiative.

In the Package we identify fourteen key categories of data and discuss the effort it will take for a government to make this data available in a meaningful way. …

The Package also highlights more than ten use cases (the number is growing) demonstrating how open data is being harnessed to address sustainable agriculture and food security around the world. Examples include:

  • mapping water points to optimise scarce resource allocation in Burkina Faso

  • surfacing daily price information on multiple food commodities across India

  • benchmarking agricultural productivity in the Netherlands

Where relevant we also highlight applicable interoperability initiatives, such as open contracting, international aid transparency initiative (IATI), and global product classification (GPC) standards.

We recognise that the agriculture sector is diverse, with many contextual differences affecting scope of activities, priorities and capacities. In the full version of the Agricultural Open Data Package we discuss important implementation considerations such as inter-agency coordination and resourcing to develop an appropriate data infrastructure and a healthy data ‘ecosystem’ for agriculture….(More)”

Four steps to precision public health

Curated on Posted on by Stefaan Verhulst
Scott F. Dowell, David Blazes & Susan Desmond-Hellmann at Nature: “When domestic transmission of Zika virus was confirmed in the United States in July 2016, the entire country was not declared at risk — nor even the entire state of Florida. Instead, precise surveillance defined two at-risk areas of Miami-Dade County, neighbourhoods measuring just 2.6 and 3.9 square kilometres. Travel advisories and mosquito control focused on those regions. Six weeks later, ongoing surveillance convinced officials to lift restrictions in one area and expand the other.

By contrast, a campaign against yellow fever launched this year in sub-Saharan Africa defines risk at the level of entire nations, often hundreds of thousands of square kilometres. More granular assessments have been deemed too complex.

The use of data to guide interventions that benefit populations more efficiently is a strategy we call precision public health. It requires robust primary surveillance data, rapid application of sophisticated analytics to track the geographical distribution of disease, and the capacity to act on such information1.

The availability and use of precise data is becoming the norm in wealthy countries. But large swathes of the developing world are not reaping its advantages. In Guinea, it took months to assemble enough data to clearly identify the start of the largest Ebola outbreak in history. This should take days. Sub-Saharan Africa has the highest rates of childhood mortality in the world; it is also where we know the least about causes of death…..

The value of precise disease tracking was baked into epidemiology from the start. In 1854, John Snow famously located cholera cases in London. His mapping of the spread of infection through contaminated water dealt a blow to the idea that the disease was caused by bad air. These days, people and pathogens move across the globe swiftly and in great numbers. In 2009, the H1N1 ‘swine flu’ influenza virus took just 35 days to spread from Mexico and the United States to China, South Korea and 12 other countries…

The public-health community is sharing more data faster; expectations are higher than ever that data will be available from clinical trials and from disease surveillance. In the past two years, the US National Institutes of Health, the Wellcome Trust in London and the Gates Foundation have all instituted open data policies for their grant recipients, and leading journals have declared that sharing data during disease emergencies will not impede later publication.

Meanwhile, improved analysis, data visualization and machine learning have expanded our ability to use disparate data sources to decide what to do. A study published last year4 used precise geospatial modelling to infer that insecticide-treated bed nets were the single most influential intervention in the rapid decline of malaria.

However, in many parts of the developing world, there are still hurdles to the collection, analysis and use of more precise public-health data. Work towards malaria elimination in South Africa, for example, has depended largely on paper reporting forms, which are collected and entered manually each week by dozens of subdistricts, and eventually analysed at the province level. This process would be much faster if field workers filed reports from mobile phones.

Sources: Ref. 8/Bill & Melinda Gates Foundation

…Frontline workers should not find themselves frustrated by global programmes that fail to take into account data on local circumstances. Wherever they live — in a village, city or country, in the global south or north — people have the right to public-health decisions that are based on the best data and science possible, that minimize risk and cost, and maximize health in their communities…(More)”

Solving some of the world’s toughest problems with the Global Open Policy Report

Curated on Posted on by Stefaan Verhulst

 at Creative Commons: “Open Policy is when governments, institutions, and non-profits enact policies and legislation that makes content, knowledge, or data they produce or fund available under a permissive license to allow reuse, revision, remix, retention, and redistribution. This promotes innovation, access, and equity in areas of education, data, software, heritage, cultural content, science, and academia.

For several years, Creative Commons has been tracking the spread of open policies around the world. And now, with the new Global Open Policy Report (PDF) by the Open Policy Network, we’re able to provide a systematic overview of open policy development.

screen-shot-2016-12-02-at-5-57-09-pmThe first-of-its-kind report gives an overview of open policies in 38 countries, across four sectors: education, science, data and heritage. The report includes an Open Policy Index and regional impact and local case studies from Africa, the Middle East, Asia, Australia, Latin America, Europe, and North America. The index measures open policy strength on two scales: policy strength and scope, and level of policy implementation. The index was developed by researchers from CommonSphere, a partner organization of CC Japan.

The Open Policy Index scores were used to classify countries as either Leading, Mid-Way, or Delayed in open policy development. The ten countries with the highest scores are Argentina, Bolivia, Chile, France, Kyrgyzstan, New Zealand, Poland, South Korea, Tanzania, and Uruguay…(More)

Social Movements and World-System Transformation

Curated on Posted on by Stefaan Verhulst

Book edited by Jackie Smith, Michael Goodhart, Patrick Manning, and John Markoff: “At a particularly urgent world-historical moment, this volume brings together some of the leading researchers of social movements and global social change and other emerging scholars and practitioners to advance new thinking about social movements and global transformation. Social movements around the world today are responding to crisis by defying both political and epistemological borders, offering alternatives to the global capitalist order that are imperceptible through the modernist lens. Informed by a world-historical perspective, contributors explain today’s struggles as building upon the experiences of the past while also coming together globally in ways that are inspiring innovation and consolidating new thinking about what a fundamentally different, more equitable, just, and sustainable world order might look like.

This collection offers new insights into contemporary movements for global justice, challenging readers to appreciate how modernist thinking both colors our own observations and complicates the work of activists seeking to resolve inequities and contradictions that are deeply embedded in Western cultural traditions and institutions. Contributors consider today’s movements in the longue durée—that is, they ask how Occupy Wall Street, the Arab Spring, and other contemporary struggles for liberation reflect, build upon, or diverge from anti-colonial and other emancipatory struggles of the past. Critical to this volume is its exploration of how divisions over gender equity and diversity of national cultures and class have impacted what are increasingly intersectional global movements. The contributions of feminist and indigenous movements come to the fore in this collective exploration of what the movements of yesterday and today can contribute to our ongoing effort to understand the dynamics of global transformation in order to help advance a more equitable, just, and ecologically sustainable world….(More)”.

The age of analytics: Competing in a data-driven world

Curated on Posted on by Stefaan Verhulst

Updated report by the McKinsey Global Institute: “Back in 2011, the McKinsey Global Institute published a report highlighting the transformational potential of big data. Five years later, we remain convinced that this potential has not been overhyped. In fact, we now believe that our 2011 analyses gave only a partial view. The range of applications and opportunities has grown even larger today. The convergence of several technology trends is accelerating progress. The volume of data continues to double every three years as information pours in from digital platforms, wireless sensors, and billions of mobile phones. Data storage capacity has increased, while its cost has plummeted. Data scientists now have unprecedented computing power at their disposal, and they are devising ever more sophisticated algorithms….

There has been uneven progress in capturing value from data and analytics…

  • ƒ The EU public sector: Our 2011 report analyzed how the European Union’s public sector could use data and analytics to make government services more efficient, reduce fraud and errors in transfer payments, and improve tax collection, potentially achieving some €250 billion worth of annual savings. But only about 10 to 20 percent of this has materialized. Some agencies have moved more interactions online, and many (particularly tax agencies) have introduced pre-filled forms. But across Europe and other advanced economies, adoption and capabilities vary greatly. The complexity of existing systems and the difficulty of attracting scarce analytics talent with public-sector salaries have slowed progress. Despite this, we see even wider potential today for societies to use analytics to make more evidence-based decisions in many aspects of government. ƒ

US health care: To date, only 10 to 20 percent of the opportunities we outlined in 2011 have been realized by the US health-care sector. A range of barriers—including a lack of incentives, the difficulty of process and organizational changes, a shortage of technical talent, data-sharing challenges, and regulations—have combined to limit adoption. Within clinical operations, the biggest success has been the shift to electronic medical records, although the vast stores of data they contain have not yet been fully mined. While payers have been slow to capitalize on big data for accounting and pricing, a growing industry now aggregates and synthesizes clinical records, and analytics have taken on new importance in public health surveillance. Many pharmaceutical firms are using analytics in R&D, particularly in streamlining clinical trials. While the health-care sector continues to lag in adoption, there are enormous unrealized opportunities to transform clinical care and deliver personalized medicine… (More)”

Executive Summary (PDF–1MB)

Full Report (PDF–3MB)

Appendix (PDF–533KB)

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