Chapter by Matt Laessig, Bryon Jacob and Carla AbouZahr in The Palgrave Handbook of Global Health Data Methods for Policy and Practice: “…provide best practices for organizations to adopt to disseminate data openly for others to use. They describe development of the open data movement and its rapid adoption by governments, non-governmental organizations, and research groups. The authors provide examples from the health sector—an early adopter—but acknowledge concerns specific to health relating to informed consent, intellectual property, and ownership of personal data. Drawing on their considerable contributions to the open data movement, Laessig and Jacob share their Open Data Progression Model. They describe six stages to make data open: from data collection, documentation of the data, opening the data, engaging the community of users, making the data interoperable, to finally linking the data….(More)”
A Taxonomy of Definitions for the Health Data Ecosystem
Announcement: “Healthcare technologies are rapidly evolving, producing new data sources, data types, and data uses, which precipitate more rapid and complex data sharing. Novel technologies—such as artificial intelligence tools and new internet of things (IOT) devices and services—are providing benefits to patients, doctors, and researchers. Data-driven products and services are deepening patients’ and consumers’ engagement and helping to improve health outcomes. Understanding the evolving health data ecosystem presents new challenges for policymakers and industry. There is an increasing need to better understand and document the stakeholders, the emerging data types and their uses.
The Future of Privacy Forum (FPF) and the Information Accountability Foundation (IAF) partnered to form the FPF-IAF Joint Health Initiative in 2018. Today, the Initiative is releasing A Taxonomy of Definitions for the Health Data Ecosystem; the publication is intended to enable a more nuanced, accurate, and common understanding of the current state of the health data ecosystem. The Taxonomy outlines the established and emerging language of the health data ecosystem. The Taxonomy includes definitions of:
- The stakeholders currently involved in the health data ecosystem and examples of each;
- The common and emerging data types that are being collected, used, and shared across the health data ecosystem;
- The purposes for which data types are used in the health data ecosystem; and
- The types of actions that are now being performed and which we anticipate will be performed on datasets as the ecosystem evolves and expands.
This report is as an educational resource that will enable a deeper understanding of the current landscape of stakeholders and data types….(More)”.
Come to Finland if you want to glimpse the future of health data!
Jukka Vahti at Sitra: “The Finnish tradition of establishing, maintaining and developing data registers goes back to the 1600s, when parish records were first kept.
When this old custom is combined with the opportunities afforded by digitisation, the positive approach Finns have towards research and technology, and the recently updated legislation enabling the data economy, Finland and the Finnish people can lead the way as Europe gradually, or even suddenly, switches to a fair data economy.
The foundations for a fair data economy already exist
The fair data economy is a natural continuation of the former projects promoting e-services that were undertaken in Finland.
For example, the Data Exchange Layer is already speeding up the transfer of data from one system to another in Finland and in Estonia, the country where the system originated, and a system unique to just these two countries.
In May 2019 Finland also saw the entry into force of the Act on the Secondary Use of Health and Social Data, according to which the information on social welfare and healthcare held in registers may be used for purposes of statistics, research, education, knowledge management, control and supervision conducted by authorities, and development and innovation activity.
The new law will make the work of researchers and service developers more effective, as the business of acquiring a permit will take place through a one-stop-shop principle and it will be possible to use data from more than one source more readily than before….(More)”.
What if government was a game?
TedX Talk by Gianluca Sgueo: “How does gaming link people in today society? In business, companies use gamification as a marketing tool to attract customer; while government and non-governmental organizations deploy it to connect citizens and public powers. Gianluca Sgueo, a global professor major in public law and policy analyst, tells us how a gamified government facilitates and engages the citizens in the policy-making process; as well as its inconspicuous but important impacts brought to our lives. Gianluca Sgueo is Global Media Professor at New York University in Florence, Visiting Professor at HEC Paris and Research Associate at the Center of Social Studies of the University of Coimbra. His area of expertise is the public sector, to which he provides professional services. His academic work focuses on participatory democracy, lobbying and globalization and he is author of a recent work about Games, Powers & Democracies….(More)
The 100 Questions Initiative: Sourcing 100 questions on key societal challenges that can be answered by data insights
Press Release: “The Governance Lab at the NYU Tandon School of Engineering announced the launch of the 100 Questions Initiative — an effort to identify the most important societal questions whose answers can be found in data and data science if the power of data collaboratives is harnessed.
The initiative, launched with initial support from Schmidt Futures, seeks to address challenges on numerous topics, including migration, climate change, poverty, and the future of work.
For each of these areas and more, the initiative will seek to identify questions that could help unlock the potential of data and data science with the broader goal of fostering positive social, environmental, and economic transformation. These questions will be sourced by leveraging “bilinguals” — practitioners across disciplines from all over the world who possess both domain knowledge and data science expertise.
The 100 Questions Initiative starts by identifying 10 key questions related to migration. These include questions related to the geographies of migration, migrant well-being, enforcement and security, and the vulnerabilities of displaced people. This inaugural effort involves partnerships with the International Organization for Migration (IOM) and the European Commission, both of which will provide subject-matter expertise and facilitation support within the framework of the Big Data for Migration Alliance (BD4M).
“While there have been tremendous efforts to gather and analyze data relevant to many of the world’s most pressing challenges, as a society, we have not taken the time to ensure we’re asking the right questions to unlock the true potential of data to help address these challenges,” said Stefaan Verhulst, co-founder and chief research and development officer of The GovLab. “Unlike other efforts focused on data supply or data science expertise, this project seeks to radically improve the set of questions that, if answered, could transform the way we solve 21st century problems.”
In addition to identifying key questions, the 100 Questions Initiative will also focus on creating new data collaboratives. Data collaboratives are an emerging form of public-private partnership that help unlock the public interest value of previously siloed data. The GovLab has conducted significant research in the value of data collaboration, identifying that inter-sectoral collaboration can both increase access to information (e.g., the vast stores of data held by private companies) as well as unleash the potential of that information to serve the public good….(More)”.
Can tracking people through phone-call data improve lives?
Amy Maxmen in Nature: “After an earthquake tore through Haiti in 2010, killing more than 100,000 people, aid agencies spread across the country to work out where the survivors had fled. But Linus Bengtsson, a graduate student studying global health at the Karolinska Institute in Stockholm, thought he could answer the question from afar. Many Haitians would be using their mobile phones, he reasoned, and those calls would pass through phone towers, which could allow researchers to approximate people’s locations. Bengtsson persuaded Digicel, the biggest phone company in Haiti, to share data from millions of call records from before and after the quake. Digicel replaced the names and phone numbers of callers with random numbers to protect their privacy.
Bengtsson’s idea worked. The analysis wasn’t completed or verified quickly enough to help people in Haiti at the time, but in 2012, he and his collaborators reported that the population of Haiti’s capital, Port-au-Prince, dipped by almost one-quarter soon after the quake, and slowly rose over the next 11 months1. That result aligned with an intensive, on-the-ground survey conducted by the United Nations.
Humanitarians and researchers were thrilled. Telecommunications companies scrutinize call-detail records to learn about customers’ locations and phone habits and improve their services. Researchers suddenly realized that this sort of information might help them to improve lives. Even basic population statistics are murky in low-income countries where expensive household surveys are infrequent, and where many people don’t have smartphones, credit cards and other technologies that leave behind a digital trail, making remote-tracking methods used in richer countries too patchy to be useful.
Since the earthquake, scientists working under the rubric of ‘data for good’ have analysed calls from tens of millions of phone owners in Pakistan, Bangladesh, Kenya and at least two dozen other low- and middle-income nations. Humanitarian groups say that they’ve used the results to deliver aid. And researchers have combined call records with other information to try to predict how infectious diseases travel, and to pinpoint locations of poverty, social isolation, violence and more (see ‘Phone calls for good’)….(More)”.
Platforms that trigger innovation
Report by the Caixa Foundation: “…The Work4Progress programme thus supports the creation of “Open Innovation Platforms for the creation of employment in Peru, India and Mozambique” by means of collaborative partnerships between local civil society organisations, private sector, administration, universities and Spanish NGOs.
The main innovation of this programme is the incorporation of new tools and methodologies in: (1) listening and identification of community needs, (2) the co-creation and prototyping of new solutions, (3) the exploration of instruments for scaling, (4) governance, (5) evolving evaluation systems and (6) financing strategies. The goal of all of the above is to try to incorporate innovation strategies comprehensively in all components.
Work4Progress has been designed with a Think-and-Do-Tank mentality. The
member organisations of the platforms are experimenting in the field, while a group of international experts helps us to obtain this knowledge and share it with centres of thought and action at international level. In fact, this is the objective of this publication: to share the theoretical framework of the programme, to connect these ideas with concrete examples and to continue to strengthen the meeting point between social innovation and development cooperation.
Work4Progress is offered as a ‘living lab’ to test new methodologies that may be useful for other philanthropic institutions, governments or entities specialising in international development….(More)”.
The Geopolitics of Information
Paper by Eric Rosenbach and Katherine Mansted: “Information is now the world’s most consequential and contested geopolitical resource. The world’s most profitable businesses have asserted for years that data is the “new oil.” Political campaigns—and foreign intelligence operatives—have shown over the past two American presidential elections that data-driven social media is the key to public opinion. Leading scientists and technologists understand that good datasets, not just algorithms, will give them a competitive edge.
Data-driven innovation is not only disrupting economies and societies; it is reshaping relations between nations. The pursuit of information power—involving states’ ability to use information to influence, decide, create and communicate—is causing states to rewrite their terms of engagement with markets and citizens, and to redefine national interests and strategic priorities. In short, information power is altering the nature and behavior of the fundamental building block of international relations, the state, with potentially seismic consequences.
Authoritarian governments recognize the strategic importance of information and over the past five years have operationalized powerful domestic and international information strategies. They are cauterizing their domestic information environments and shutting off their citizens from global information flows, while weaponizing information to attack and destabilize democracies. In particular, China and Russia believe that strategic competition in the 21st century is characterized by a zero-sum contest for control of data, as well as the technology and talent needed to convert data into useful information.
Democracies remain fundamentally unprepared for strategic competition in the Information Age. For the United States in particular, as the importance of information as a geopolitical resource has waxed, its information dominance has waned. Since the end of the Cold War, America’s supremacy in information technologies seemed unassailable—not least because of its central role in creating the Internet and overall economic primacy. Democracies have also considered any type of information strategy to be largely unneeded: government involvement in the domestic information environment feels Orwellian, while democracies believed that their “inherently benign” foreign policy didn’t need extensive influence operations.
However, to compete and thrive in the 21st century, democracies, and the United States in particular, must develop new national security and economic strategies that address the geopolitics of information. In the 20th century, market capitalist democracies geared infrastructure, energy, trade, and even social policy to protect and advance that era’s key source of power—manufacturing. In this century, democracies must better account for information geopolitics across all dimensions of domestic policy and national strategy….(More)”.
Social media data reveal where visitors to nature locations provide potential benefits or threats to biodiversity
University of Helsinki: “In a new article published in the journal Science of the Total Environment, a team of researchers assessed global patterns of visitation rates, attractiveness and pressure to more than 12,000 Important Bird and Biodiversity Areas (IBAs), which are sites of international significance for nature conservation, by using geolocated data mined from social media (Twitter and Flickr).
The study found that Important Bird and Biodiversity Areas located in Europe and Asia, and in temperate biomes, had the highest density of social media users. Results also showed that sites of importance for congregatory species, which were also more accessible, more densely populated and provided more tourism facilities, received higher visitation than did sites richer in bird species.
“Resources in biodiversity conservation are woefully inadequate and novel data sources from social media provide openly available user-generated information about human-nature interactions, at an unprecedented spatio-temporal scale”, says Dr Anna Hausmann from the University of Helsinki, a conservation scientist leading the study. “Our group has been exploring and validating data retrieved from social media to understand people´s preferences for experiencing nature in national parks at a local, national and continental scale”, she continues, “in this study, we expand our analyses at a global level”. …
“Social media content and metadata contain useful information for understanding human-nature interactions in space and time”, says Prof. Tuuli Toivonen, another co-author in the paper and the leader of the Digital Geography Lab at the University of Helsinki. “Social media data can also be used to cross-validate and enrich data collected by conservation organizations”, she continues. The study found that the 17 percent of all Important Bird and Biodiversity Areas (IBA) that were assessed by experts to be under greater human disturbance also had higher density of social media users….(More)”.
Commission publishes guidance on free flow of non-personal data
European Commission: “The guidance fulfils an obligation in the Regulation on the free flow of non-personal data (FFD Regulation), which requires the Commission to publish a guidance on the interaction between this Regulation and the General Data Protection Regulation (GDPR), especially as regards datasets composed of both personal and non-personal data. It aims to help users – in particular small and medium-sized enterprises – understand the interaction between the two regulations.
In line with the existing GDPR documents, prepared by the European Data Protection Board, this guidance document aims to clarify which rules apply when processing personal and non-personal data. It gives a useful overview of the central concepts of the free flow of personal and non-personal data within the EU, while explaining the relation between the two Regulations in practical terms and with concrete examples….
Non-personal data are distinct from personal data, as laid down in the GDPR Regulation. The non-personal data can be categorised in terms of origin, namely:
- data which originally did not relate to an identified or identifiable natural person, such as data on weather conditions generated by sensors installed on wind turbines, or data on maintenance needs for industrial machines; or
- data which was initially personal data, but later made anonymous.
While the guidance refers to more examples of non-personal data, it also explains the concept of personal data, anonymised and pseudonymised, to provide a better understanding as well describes the limitations between personal and non-personal data.
What are mixed datasets?
In most real-life situations, a dataset is very likely to be composed of both personal and non-personal data. This is often referred to as a “mixed dataset”. Mixed datasets represent the majority of datasets used in the data economy and commonly gathered thanks to technological developments such as the Internet of Things (i.e. digitally connecting objects), artificial intelligence and technologies enabling big data analytics.
Examples of mixed datasets include a company’s tax records, mentioning the name and telephone number of the managing director of the company. This can also include a company’s knowledge of IT problems and solutions based on individual incident reports, or a research institution’s anonymised statistical data and the raw data initially collected, such as the replies of individual respondents to statistical survey questions….(More)”.