Data Collaboratives in Response to COVID19

Curated on Posted on by Stefaan Verhulst

Living Repository: “This document is part of a call for action to build a responsible infrastructure for data-driven pandemic response. 

It serves as a living repository for data collaboratives seeking to address the spread of COVID-19 and its secondary effects. 

> You can find ongoing data collaborative projects here

> Requests for data and expertise that might lead to data collaboratives can be found here.

> Data competitions, challenges, and calls for proposals, which can lead to useful tools to combat COVID-19, can be found here.

The repository aims to include projects that show a commitment to privacy protection, data responsibility, and overall user well-being. 

It will be updated regularly as we receive projects and proposals or otherwise become aware of them. 

HELP US MAKE THIS REPOSITORY BETTER:  Individuals are encouraged to edit the repo and/or suggest additions to this document if a project is not currently listed.

See full Living Repository here.

Global Data Access for Solving Rare Disease: A Health Economics Value Framework

Curated on Posted on by Stefaan Verhulst

WEF Report: “…The genomic nature of rare disease suggests an opportunity. By bringing together genomic, phenotypic, and clinical data at a global scale, individual countries and hospitals carrying out genomics research could come up with more answers both to diagnose currently undiagnosed or misdiagnosed people with rare disease and to develop treatments.

With an estimated 15.2 million individuals expected to have clinical genomic testing for a rare condition within the next five years, it is time to evaluate the economic and societal benefits of developing a system that can share this data without compromising privacy.

The answer is a technical solution called a “federated data system”. This is a data superstructure that can aggregate remote data sets for querying while still allowing for localized, data control and security. The groupings are independent, but interoperable. They have their own governance and the information inside them is protected, but they offer evidence – conclusions gathered from the data – that can be used to feed a much larger, global data engine.

The result is a robust and well-annotated dataset that in the case of rare diseases can be added to and then used by different countries to enable global and country-specific solutions to diagnosis, treatment, patient trial recruitment and management of rare diseases. Developing federated data systems is one of the many investments countries are currently considering. Yet since its implementation can be costly (about half a million US dollars) is it the right solution?…(More)”.

Toward Building The Data Infrastructure And Ecosystem We Need To Tackle Pandemics And Other Dynamic Societal And Environmental Threats

Curated on Posted on by Stefaan Verhulst

CALL FOR ACTION: “The spread of COVID-19 is a human tragedy and a worldwide crisis. The social and economic costs are huge, and they are contributing to a global slowdown. Despite the amount of data collected daily, we have not been able to leverage them to accelerate our understanding and action to counter COVID-19. As a result we have entered a global state of profound uncertainty and anxiety.

The current pandemic has not only shown vulnerabilities in our public health systems but has also made visible our failure to re-use data between the public and private sectors — what we call data collaboratives — to inform decision makers how to fight dynamic threats like the novel Coronavirus.

We have known for years that the re-use of aggregated and anonymized data — including from telecommunications, social media, and satellite feeds — can improve traditional models for tracking disease propagation. Telecommunications data has, for instance, been re-used to support the response to Ebola in Africa (Orange) and swine flu in Mexico (Telefónica). Social media data has been re-used to understand public perceptions around Zika in Brazil (Facebook). Satellite data has been used to track seasonal measles in Niger using nighttime lights. Geospatial data has similarly supported malaria surveillance and eradication efforts in Sub-Saharan Africa. In general, many infectious diseases have been monitored using mobile phones and mobility.

The potential and realized contributions of these and other data collaboratives reveal that the supply of and demand for data and data expertise are widely dispersed. They are spread across government, the private sector, and civil society and often poorly matched.

Much data needed by researchers is never made accessible to those who could productively put it to use while much data that is released is never used in a systematic and sustainable way during and post crisis.

This failure results in tremendous inefficiencies and costly delays in how we respond. It means lost opportunities to save lives and a persistent lack of preparation for future threats….(More)”. SIGN AND JOIN HERE.

See also Living Repository of Data4COVID19 Collaboratives.

The Coronavirus Tech Handbook

Curated on Posted on by Stefaan Verhulst

About: “The Coronavirus Tech Handbook provides a space for technologists, specialists, civic organisations and public & private institutions to collaborate on a rapid and sophisticated response to the coronavirus outbreak. It is an active and evolving resource with thousands of expert contributors.

In less than two weeks it has grown to cover areas including:

  • Detailed guidance for doctors and nurses,
  • Advice and tools for educators adjusting to remote teaching, 
  • Community of open-source ventilator designers
  • Comprehensive data and models for forecasting the spread of the virus.

Coronavirus Tech Handbook’s goal is to create a rapidly evolving open source technical knowledge base that will help all institutions across civil society and the public sector collaborate to fight the outbreak. 

Coronavirus Tech Handbook is not a place for the public to get advice, but a place for specialists to collaborate and make sure the best solutions are quickly shared and deployed….(More)”.

World Justice Project (WJP) Rule of Law Index®

Curated on Posted on by Stefaan Verhulst

Interactive Overview: “The World Justice Project (WJP) Rule of Law Index® is the world’s leading source for original, independent data on the rule of law. Now covering 128 countries and jurisdictions, the Index relies on national surveys of more than 130,000 households and 4,000 legal practitioners and experts to measure how the rule of law is experienced and perceived around the world.

Effective rule of law reduces corruption, combats poverty and disease, and protects people from injustices large and small. It is the foundation for communities of justice, opportunity, and peace—underpinning development, accountable government, and respect for fundamental rights.

Learn more about the rule of law and explore the full WJP Rule of Law Index 2020 report, including PDF report download, data insights, methodology, and more at the Index report resources page….(More)”

Statement of the EDPB Chair on the processing of personal data in the context of the COVID-19 outbreak

Curated on Posted on by Stefaan Verhulst

European Data Protection Board: “Governments, public and private organisations throughout Europe are taking measures to contain and mitigate COVID-19. This can involve the processing of different types of personal data.  

Andrea Jelinek, Chair of the European Data Protection Board (EDPB), said: “Data protection rules (such as GDPR) do not hinder measures taken in the fight against the coronavirus pandemic. However, I would like to underline that, even in these exceptional times, the data controller must ensure the protection of the personal data of the data subjects. Therefore, a number of considerations should be taken into account to guarantee the lawful processing of personal data.”

The GDPR is a broad legislation and also provides for the rules to apply to the processing of personal data in a context such as the one relating to COVID-19. Indeed, the GDPR provides for the legal grounds to enable the employers and the competent public health authorities to process personal data in the context of epidemics, without the need to obtain the consent of the data subject. This applies for instance when the processing of personal data is necessary for the employers for reasons of public interest in the area of public health or to protect vital interests (Art. 6 and 9 of the GDPR) or to comply with another legal obligation.

For the processing of electronic communication data, such as mobile location data, additional rules apply. The national laws implementing the ePrivacy Directive provide for the principle that the location data can only be used by the operator when they are made anonymous, or with the consent of the individuals. The public authorities should first aim for the processing of location data in an anonymous way (i.e. processing data aggregated in a way that it cannot be reversed to personal data). This could enable to generate reports on the concentration of mobile devices at a certain location (“cartography”).  

When it is not possible to only process anonymous data, Art. 15 of the ePrivacy Directive enables the member states to introduce legislative measures pursuing national security and public security *. This emergency legislation is possible under the condition that it constitutes a necessary, appropriate and proportionate measure within a democratic society. If such measures are introduced, a Member State is obliged to put in place adequate safeguards, such as granting individuals the right to judicial remedy….(More)”.

CARE Principles for Indigenous Data Governance

Curated on Posted on by Stefaan Verhulst

The Global Indigenous Data Alliance: “The current movement toward open data and open science does not fully engage with Indigenous Peoples rights and interests. Existing principles within the open data movement (e.g. FAIR: findable, accessible, interoperable, reusable) primarily focus on characteristics of data that will facilitate increased data sharing among entities while ignoring power differentials and historical contexts. The emphasis on greater data sharing alone creates a tension for Indigenous Peoples who are also asserting greater control over the application and use of Indigenous data and Indigenous Knowledge for collective benefit.

This includes the right to create value from Indigenous data in ways that are grounded in Indigenous worldviews and realise opportunities within the knowledge economy. The CARE Principles for Indigenous Data Governance are people and purpose-oriented, reflecting the crucial role of data in advancing Indigenous innovation and self-determination. These principles complement the existing FAIR principles encouraging open and other data movements to consider both people and purpose in their advocacy and pursuits….(More)”.

Building Blocks and New Frontiers for Open Government

Curated on Posted on by Stefaan Verhulst

Paper by Aichida Ul-Aflaha, Mary McNeil and Saki Kumagai: “This paper summarizes the World Bank’s knowledge on open, participatory, and responsive governance. It offers a rethinking and broadening of the term “open government” in light of the World Bank Group’s Strategic Framework for Mainstreaming Citizen Engagement in World Bank Group Operations and World Development Report 2017: Governance and the Law. The building blocks of open government are documented based on experience and growing trends. The paper also tries to identify new frontiers and presents a summary of action steps for advancing the open, participatory, and responsive governance agenda within the World Bank….(More)”.

Global Traffic Scorecard

Curated on Posted on by Stefaan Verhulst

Press Release: “…the 2019 INRIX Global Traffic Scorecard… identified, analyzed and ranked congestion and mobility trends in more than 900 cities, across 43 countries. To reflect an increasingly diverse mobility landscape, the 2019 Global Traffic Scorecard includes both public transport and biking metrics for the first time….

At the global level, Bogota topped the list of the cities most impacted by traffic congestion with drivers losing 191 hours a year to congestion, followed by Rio de Janeiro (190 hours), Mexico City (158 hours) and Istanbul (150 hours). Latin American and European cities again dominated the Top 10, highlighting the rapid urbanisation occurring in Latin America and historic European cities that took shape long before the age of automobile….

INRIX fuses anonymous data from diverse datasets – such as phones, cars, trucks and cities – that leads to robust and accurate insights. The data used in the 2019 Global Traffic Scorecard is the congested or uncongested status of every segment of road for every minute of the day, as used by millions of drivers around the world that rely on INRIX-based traffic services….(More)”

Techlash? America’s Growing Concern with Major Technology Companies

Curated on Posted on by Stefaan Verhulst

Press Release: “Just a few years ago, Americans were overwhelmingly optimistic about the power of new technologies to foster an informed and engaged society. More recently, however, that confidence has been challenged by emerging concerns over the role that internet and technology companies — especially social media — now play in our democracy.

A new Knight Foundation and Gallup study explores how much the landscape has shifted. This wide-ranging study confirms that, for Americans, the techlash is real, widespread, and bipartisan. From concerns about the spread of misinformation to election interference and data privacy, we’ve documented the deep pessimism of folks across the political spectrum who believe tech companies have too much power — and that they do more harm than good. 

Despite their shared misgivings, Americans are deeply divided on how best to address these challenges. This report explores the contours of the techlash in the context of the issues currently animating policy debates in Washington and Silicon Valley. Below are the main findings from the executive summary….

  • 77% of Americans say major internet and technology companies like Facebook, Google, Amazon and Apple have too muchpower.
  • Americans are equally divided among those who favor (50%) and oppose (49%) government intervention that would require internet and technology companies to break into smaller companies. 
  • Americans do not trust social media companies much (44%) or at all (40%) to make the right decisions about what content should or should not be allowed on online platforms.
  • However, they would still prefer the companies (55%) to make those decisions rather than the government (44%). …(More)“