Can digital technologies improve health?


The Lancet: “If you have followed the news on digital technology and health in recent months, you will have read of a blockbuster fraud trial centred on a dubious blood-testing device, a controversial partnership between a telehealth company and a data analytics company, a social media company promising action to curb the spread of vaccine misinformation, and another addressing its role in the deteriorating mental health of young women. For proponents and critics alike, these stories encapsulate the health impact of many digital technologies, and the uncertain and often unsubstantiated position of digital technologies for health. The Lancet and Financial Times Commission on governing health futures 2030: growing up in a digital world, brings together diverse, independent experts to ask if this narrative can still be turned around? Can digital technologies deliver health benefits for all?

Digital technologies could improve health in many ways. For example, electronic health records can support clinical trials and provide large-scale observational data. These approaches have underpinned several high-profile research findings during the COVID-19 pandemic. Sequencing and genomics have been used to understand SARS-CoV-2 transmission and evolution. There is vast promise in digital technology, but the Commission argues that, overall, digital transformations will not deliver health benefits for all without fundamental and revolutionary realignment.

Globally, digital transformations are well underway and have had both direct and indirect health consequences. Direct effects can occur through, for example, the promotion of health information or propagating misinformation. Indirect ones can happen via effects on other determinants of health, including social, economic, commercial, and environmental factors, such as influencing people’s exposure to marketing or political messaging. Children and adolescents growing up in this digital world experience the extremes of digital access. Young people who spend large parts of their lives online may be protected or vulnerable to online harm. But many individuals remain digitally excluded, affecting their access to education and health information. Digital access, and the quality of that access, must be recognised as a key determinant of health. The Commission calls for connectivity to be recognised as a public good and human right.

Describing the accumulation of data and power by dominant actors, many of which are commercial, the Commissioners criticise business models based on the extraction of personal data, and those that benefit from the viral spread of misinformation. To redirect digital technologies to advance universal health coverage, the Commission invokes the guiding principles of democracy, equity, solidarity, inclusion, and human rights. Governments must protect individuals from emerging threats to their health, including bias, discrimination, and online harm to children. The Commission also calls for accountability and transparency in digital transformations, and for the governance of misinformation in health care—basic principles, but ones that have been overridden in a quest for freedom of expression and by the fear that innovation could be sidelined. Public participation and codesign of digital technologies, particularly including young people and those from affected communities, are fundamental.

The Commission also advocates for data solidarity, a radical new approach to health data in which both personal and collective interests and responsibilities are balanced. Rather than data being regarded as something to be owned or hoarded, it emphasises the social and relational nature of health data. Countries should develop data trusts that unlock potential health benefits in public data, while also safeguarding it.

Digital transformations cannot be reversed. But they must be rethought and changed. At its heart, this Commission is both an exposition of the health harms of digital technologies as they function now, and an optimistic vision of the potential alternatives. Calling for investigation and expansion of digital health technologies is not misplaced techno-optimism, but a serious opportunity to drive much needed change. Without new approaches, the world will not achieve the 2030 Sustainable Development Goals.

However, no amount of technical innovation or research will bring equitable health benefits from digital technologies without a fundamental redistribution of power and agency, achievable only through appropriate governance. There is a desperate need to reclaim digital technologies for the good of societies. Our future health depends on it….(More)”.

Data for Children Collaborative Designs Responsible Data Solutions for Cross-Sector Services


Impact story by data.org: “That is the question that the Collaborative set out to answer: how do we define and support strong data ethics in a way that ensures it is no longer an afterthought? How do we empower organizations to make it their priority?…

Fassio, Data for Children Collaborative Director Alex Hutchison, and the rest of their five-person team set out to create a roadmap for data responsibility. They started with their own experiences and followed the lifecycle of a non-profit project from conception to communicating results.

The journey begins – for project leaders and for the Collaborative – with an ethical assessment before any research or intervention has been conducted. The assessment calls on project teams to reflect on their motivations and ethical issues at the start, midpoint, and results stages of a project, ensuring that the priority stakeholder remains at the center. Some of the elements are directly tied to data, like data collection, security, and anonymization, but the assessment goes beyond the hard data and into its applications and analysis, including understanding stakeholder landscape and even the appropriate language to use when communicating outputs.

For the Collaborative, that priority is children. But they’ve designed the assessment, which maps across to UNICEF’s Responsible Data for Children (RD4C) toolkit, and other responsible innovation resources to be adaptable for other sectors.

“We wanted to make it really accessible for people with no background in ethics or data. We wanted anyone to be able to approach it,” Fassio said. “Because it is data-focused, there’s actually a very wide application. A lot of the questions we ask are very transferable to other groups.”

The same is true for their youth participation workbook – another resource in the toolkit. The team engaged young people to help co-create the process, staying open to revisions and iterations based on people’s experiences and feedback….(More)”

Data Science for Social Good: Philanthropy and Social Impact in a Complex World


Book edited by Ciro Cattuto and Massimo Lapucci: “This book is a collection of insights by thought leaders at first-mover organizations in the emerging field of “Data Science for Social Good”. It examines the application of knowledge from computer science, complex systems, and computational social science to challenges such as humanitarian response, public health, and sustainable development. The book provides an overview of scientific approaches to social impact – identifying a social need, targeting an intervention, measuring impact – and the complementary perspective of funders and philanthropies pushing forward this new sector.

TABLE OF CONTENTS


Introduction; By Massimo Lapucci

The Value of Data and Data Collaboratives for Good: A Roadmap for Philanthropies to Facilitate Systems Change Through Data; By Stefaan G. Verhulst

UN Global Pulse: A UN Innovation Initiative with a Multiplier Effect; By Dr. Paula Hidalgo-Sanchis

Building the Field of Data for Good; By Claudia Juech

When Philanthropy Meets Data Science: A Framework for Governance to Achieve Data-Driven Decision-Making for Public Good; By Nuria Oliver

Data for Good: Unlocking Privately-Held Data to the Benefit of the Many; By Alberto Alemanno

Building a Funding Data Ecosystem: Grantmaking in the UK; By Rachel Rank

A Reflection on the Role of Data for Health: COVID-19 and Beyond; By Stefan E. Germann and Ursula Jasper….(More)”

Launch of UN Biodiversity Lab 2.0: Spatial data and the future of our planet


Press Release: “…The UNBL 2.0 is a free, open-source platform that enables governments and others to access state-of-the-art maps and data on nature, climate change, and human development in new ways to generate insight for nature and sustainable development. It is freely available online to governments and other stakeholders as a digital public good…

The UNBL 2.0 release responds to a known global gap in the types of spatial data and tools, providing an invaluable resource to nations around the world to take transformative action. Users can now access over 400 of the world’s best available global spatial data layers; create secure workspaces to incorporate national data alongside global data; use curated data collections to generate insight for action; and more. Without specialized tools or training, decision-makers can leverage the power of spatial data to support priority-setting and the implementation of nature-based solutions. Dynamic metrics and indicators on the state of our planet are also available….(More)”.

Data Stewardship Re-Imagined — Capacities and Competencies


Blog and presentation by Stefaan Verhulst: “In ways both large and small, COVID-OVID-19 has forced us to re-examine every aspect of our political, social, and economic systems. Among the many lessons, policymakers have learned is that existing methods for using data are often insufficient for our most pressing challenges. In particular, we need to find new, innovative ways of tapping into the potential of privately held and siloed datasets that nonetheless contain tremendous public good potential, including complementing and extending official statistics. Data collaboratives are an emerging set of methods for accessing and reusing data that offer tremendous opportunities in this regard. In the last five years, we have studied and initiated numerous data collaboratives, in the process assembling a collection of over 200 example case studies to better understand their possibilities.

Among our key findings is the vital importance and essential role that needs to be played by Data Stewards.

Data stewards do not represent an entirely new profession; rather, their role could be understood as an extension and re-definition of existing organizational positions that manage and interact with data. Traditionally, the role of a data officer was limited either to data integrity or the narrow context of internal data governance and management, with a strong emphasis on technical competencies. This narrow conception is no longer sufficient, especially given the proliferation of data and the increasing potential of data sharing and collaboration. As such, we call for a re-imagination of data stewardship to encompass a wider range of functions and responsibilities, directed at leveraging data assets toward addressing societal challenges and improving people’s lives.

DATA STEWARDSHIP: functions and competencies to enable access to and re-use of data for public benefit in a systematic, sustainable, and responsible way.

In our vision, data stewards are professionals empowered to create public value (including official statistics) by re-using data and data expertise, identifying opportunities for productive cross-sectoral collaboration, and proactively requesting or enabling functional access to data, insights, and expertise. Data stewards are active in both the public and private sectors, promoting trust within and outside their organizations. They are essential to data collaboratives by providing functional access to unlock the potential of siloed data sets. In short, data stewards form a new — and essential — link in the data value chain….(More)”.

Data governance: Enhancing access to and sharing of data


OECD Recommendation: “Access to and sharing of data are increasingly critical for fostering data-driven scientific discovery and innovations across the private and public sectors globally and will play a role in solving societal challenges, including fighting COVID-19 and achieving the Sustainable Development Goals (SDGs). But restrictions to data access, sometimes compounded by a reluctance to share, and a growing awareness of the risks that come with data access and sharing, means economies and societies are not harnessing the full potential of data.


Adopted in October 2021, the OECD Recommendation on Enhancing Access to and Sharing of Data (EASD) is the first internationally agreed upon set of principles and policy guidance on how governments can maximise the cross-sectoral benefits of all types of data – personal, non-personal, open, proprietary, public and private – while protecting the rights of individuals and organisations.


The Recommendation intends to help governments develop coherent data governance policies and frameworks to unlock the potential benefits of data across and within sectors, countries, organisations, and communities. It aims to reinforce trust across the data ecosystem, stimulate investment in data and incentivise data access and sharing, and foster effective and responsible data access, sharing, and use across sectors and jurisdictions.


The Recommendation is a key deliverable of phase 3 of the OECD’s Going Digital project, focused on data governance for frowth and well-being. It was developed by three OECD Committees (Digital Economy Policy, Scientific and Technological Policy, and Public Governance) and acts as a common reference for existing and new OECD legal instruments related to data in areas such as research, health and digital government. It will provide a foundation stone for ongoing OECD work to help countries unlock the potential of data in the digital era….(More)”.

Mobile Big Data in the fight against COVID-19


Editorial to Special Collection of Data&Policy by Richard Benjamins, Jeanine Vos, and Stefaan Verhulst: “Almost two years into the COVID-19 pandemic, parts of the world feel like they may slowly be getting back to (a new) normal. Nevertheless, we know that the damage is still unfolding, and that much of the developing world Southeast Asia and Africa in particular — remain in a state of crisis. Given the global nature of this disease and the potential for mutant versions to develop and spread, a crisis anywhere is cause for concern everywhere. The world remains very much in the grip of this public health crisis.

From the beginning, there has been hope that data and technology could offer solutions to help inform governments’ response strategy and decision-making. Many of the expectations have been focused on mobile data analytics, and in particular the possibility of mobile network operators creating mobility insights and decision-making tools generated from anonymized and aggregated telco data. This hoped-for capability results from a growing group of mobile network operators investing in systems and capabilities to develop such decision-support products and services for public and private sector customers. The value of having such tools has been demonstrated in addressing different global challenges, ranging from the possibilities offered by models to better understand the spread of Zika in Brazil to interactive dashboards that aided emergency services during earthquakes and floods in Japan. Yet despite these experiences, many governments across the world still have limited awareness, capabilities, budgets and resources to leverage such tools in their efforts to limit the spread of COVID-19 using non-pharmaceutical interventions (NPI).

This special collection of papers we launched in Data & Policy examines both the potential of mobile data, as well as the challenges faced in delivering these tools to inform government decision-making. To date, the collection

Consisting of 11 papers from 71 researchers and experts from academia, industry, and government, the articles cover a wide range of geographies, including Argentina, Austria, Belgium, Brazil, Ecuador, Estonia, Europe (as a whole), France, Gambia, Germany, Ghana, Italy, Malawi, Nigeria, Nordics, and Spain. Responding to our call for case studies to illustrate the opportunities (and challenges) offered by mobile big data in the fight against COVID-19, the authors of these papers describe a number of examples of how mobile and mobile-related data have been used to address the medical, economic, socio-cultural and political aspects of the pandemic….(More)”.

Using location data responsibly in cities and local government


Article by Ben Hawes: “City and local governments increasingly recognise the power of location data to help them deliver more and better services, exactly where and when they are needed. The use of this data is going to grow, with more pressure to manage resources and emerging challenges including responding to extreme weather events and other climate impacts.

But using location data to target and manage local services comes with risks to the equitable delivery of services, privacy and accountability. To make the best use of these growing data resources, city leaders and their teams need to understand those risks and address them, and to be able to explain their uses of data to citizens.

The Locus Charter, launched earlier this year, is a set of common principles to promote responsible practice when using location data. The Charter could be very valuable to local governments, to help them navigate the challenges and realise the rewards offered by data about the places they manage….

Compared to private companies, local public bodies already have special responsibilities to ensure transparency and fairness. New sources of data can help, but can also generate new questions. Local governments have generally been able to improve services as they learned more about the people they served. Now they must manage the risks of knowing too much about people, and acting intrusively. They can also risk distorting service provision because their data about people in places is uneven or unrepresentative.

Many city and local governments fully recognise that data-driven delivery comes with risks, and are developing specific local data ethics frameworks to guide their work. Some of these, like Kansas City’s, are specifically aimed at managing data privacy. Others cover broader uses of data, like Greater Manchester’s Declaration for Intelligent and Responsible Data Practice (DTPR). DTPR is an open source communication standard that helps people understand how data is being used in public places.

London is engaging citizens on an Emerging Technology Charter, to explore new and ethically charged questions around data. Govlab supports an AI Localism repository of actions taken by local decision-makers to address the use of AI within a city or community. The EU Sherpa programme (Shaping the Ethical Dimensions of Smart Information Systems) includes a smart cities strand, and has published a case-study on the Ethics of Using Smart City AI and Big Data.

Smart city applications make it potentially possible to collect data in many ways, for many purposes, but the technologies cannot answer questions about what is appropriate. In The Smart Enough City: Putting Technology in its Place to Reclaim Our Urban Future (2019), author Ben Green describes examples when some cities have failed and others succeeded in judging what smart applications should be used.

Attention to what constitutes ethical practice with location data can give additional help to leaders making that kind of judgement….(More)”

Licensure as Data Governance


Essay by Frank Pasquale: “…A licensure regime for data and the AI it powers would enable citizens to democratically shape data’s scope and proper use, rather than resigning ourselves to being increasingly influenced and shaped by forces beyond our control.To ground the case for more ex ante regulation, Part I describes the expanding scope of data collection, analysis, and use, and the threats that that scope poses to data subjects. Part II critiques consent-based models of data protection, while Part III examines the substantive foundation of licensure models. Part IV addresses a key challenge to my approach: the free expression concerns raised by the licensure of large-scale personal data collection, analysis, and use. Part V concludes with reflections on the opportunities created by data licensure frameworks and potential limitations upon them….(More)”.

Big data for big issues: Revealing travel patterns of low-income population based on smart card data mining in a global south unequal city


Paper by Caio Pieroni, Mariana Giannotti, Bianca B.Alves, and Renato Arbex: “Smart card data (SCD) allow analyzing mobility at a fine level of detail, despite the remaining challenges such as identifying trip purpose. The use of the SCD may improve the understanding of transit users’ travel patterns from precarious settlements areas, where the residents have historically limited access to opportunities and are usually underrepresented in surveys. In this paper, we explore smart card data mining to analyze the temporal and spatial patterns of the urban transit movements from residents of precarious settlements areas in São Paulo, Brazil, and compare the similarities and differences in travel behavior with middle/high-income-class residents. One of our concerns is to identify low-paid employment travel patterns from the low-income-class residents, that are also underrepresented in transportation planning modeling due to the lack of data. We employ the k-means clustering algorithm for the analysis, and the DBSCAN algorithm is used to infer passengers’ residence locations. The results reveal that most of the low-income residents of precarious settlements begin their first trip before, between 5 and 7 AM, while the better-off group begins from 7 to 9 AM. At least two clusters formed by commuters from precarious settlement areas suggest an association of these residents with low-paid employment, with their activities placed in medium / high-income residential areas. So, the empirical evidence revealed in this paper highlights smart card data potential to unfold low-paid employment spatial and temporal patterns….(More)”.