The Future of Health Is Preventive — If We Get Data Governance Right

Curated on Posted on by Stefaan Verhulst

Article by Stefaan Verhulst: “After a long gestation period of three years, the European Health Data Space (EHDS) is now coming into effect across the European Union, potentially ushering in a new era of health data access, interoperability, and innovation. As this ambitious initiative enters the implementation phase, it brings with it the opportunity to fundamentally reshape how health systems across Europe operate. More generally, the EHDS contains important lessons (and some cautions) for the rest of the world, suggesting how a fragmented, reactive model of healthcare may transition to one that is more integrated, proactive, and prevention-oriented.

For too long, health systems–in the EU and around the world–have been built around treating diseases rather than preventing them. Now, we have an opportunity to change that paradigm. Data, and especially the advent of AI, give us the tools to predict and intervene before illness takes hold. Data offers the potential for a system that prioritizes prevention–one where individuals receive personalized guidance to stay healthy, policymakers access real-time evidence to address risks before they escalate, and epidemics are predicted weeks in advance, enabling proactive, rapid, and highly effective responses.

But to make AI-powered preventive health care a reality, and to make the EHDS a success, we need a new data governance approach, one that would include two key components:

  • The ability to reuse data collected for other purposes (e.g., mobility, retail sales, workplace trends) to improve health outcomes.
  • The ability to integrate different data sources–clinical records and electronic health records (EHRS), but also environmental, social, and economic data — to build a complete picture of health risks.

In what follows, we outline some critical aspects of this new governance framework, including responsible data access and reuse (so-called secondary use), moving beyond traditional consent models to a social license for reuse, data stewardship, and the need to prioritize high-impact applications. We conclude with some specific recommendations for the EHDS, built from the preceding general discussion about the role of AI and data in preventive health…(More)”.

Fostering Open Data

Curated on Posted on by Stefaan Verhulst

Paper by Uri Y. Hacohen: “Data is often heralded as “the world’s most valuable resource,” yet its potential to benefit society remains unrealized due to systemic barriers in both public and private sectors. While open data-defined as data that is available, accessible, and usable-holds immense promise to advance open science, innovation, economic growth, and democratic values, its utilization is hindered by legal, technical, and organizational challenges. Public sector initiatives, such as U.S. and European Union open data regulations, face uneven enforcement and regulatory complexity, disproportionately affecting under-resourced stakeholders such as researchers. In the private sector, companies prioritize commercial interests and user privacy, often obstructing data openness through restrictive policies and technological barriers. This article proposes an innovative, four-layered policy framework to overcome these obstacles and foster data openness. The framework includes (1) improving open data infrastructures, (2) ensuring legal frameworks for open data, (3) incentivizing voluntary data sharing, and (4) imposing mandatory data sharing obligations. Each policy cluster is tailored to address sector-specific challenges and balance competing values such as privacy, property, and national security. Drawing from academic research and international case studies, the framework provides actionable solutions to transition from a siloed, proprietary data ecosystem to one that maximizes societal value. This comprehensive approach aims to reimagine data governance and unlock the transformative potential of open data…(More)”.

Why more AI researchers should collaborate with governments

Curated on Posted on by Stefaan Verhulst

Article by Mohamed Ibrahim: “Artificial intelligence (AI) is beginning to transform many industries, yet its use to improve public services remains limited globally. AI-based tools could streamline access to government benefits through online chatbots or automate systems by which citizens report problems such as potholes.

Currently, scholarly advances in AI are mostly confined to academic papers and conferences, rarely translating into actionable government policies or products. This means that the expertise at universities is not used to solve real-world problems. As a No10 Innovation Fellow with the UK government and a lecturer in spatial data science, I have explored the potential of AI-driven rapid prototyping in public policy.

Take Street.AI, a prototype smartphone app that I developed, which lets citizens report issues including potholes, street violence or illegal litter dumping by simply taking a picture through the app. The AI model classifies the problem automatically and alerts the relevant local authority, passing on the location and details of the issue. A key feature of the app is its on-device processing, which ensures privacy and reduces operational costs. Similar tools were tested as an early-warning system during the riots that swept the United Kingdom in July and August 2024.

AI models can also aid complex decision-making — for instance, that involved in determining where to build houses. The UK government plans to construct 1.5 million homes in the next 5 years, but planning laws require that several parameters be considered — such as proximity to schools, noise levels, the neighbourhoods’ built-up ratio and flood risk. The current strategy is to compile voluminous academic reports on viable locations, but an online dashboard powered by AI that can optimize across parameters would be much more useful to policymakers…(More)”.

AI for collective intelligence

Curated on Posted on by Stefaan Verhulst

Introduction to special issue by Christoph Riedl and David De Cremer: “AI has emerged as a transformative force in society, reshaping economies, work, and everyday life. We argue that AI can not only improve short-term productivity but can also enhance a group’s collective intelligence. Specifically, AI can be employed to enhance three elements of collective intelligence: collective memory, collective attention, and collective reasoning. This editorial reviews key emerging work in the area to suggest ways in which AI can support the socio-cognitive architecture of collective intelligence. We will then briefly introduce the articles in the “AI for Collective Intelligence” special issue…(More)”.

Europe’s GDPR privacy law is headed for red tape bonfire within ‘weeks’

Curated on Posted on by Stefaan Verhulst

Article by Ellen O’Regan: “Europe’s most famous technology law, the GDPR, is next on the hit list as the European Union pushes ahead with its regulatory killing spree to slash laws it reckons are weighing down its businesses.

The European Commission plans to present a proposal to cut back the General Data Protection Regulation, or GDPR for short, in the next couple of weeks. Slashing regulation is a key focus for Commission President Ursula von der Leyen, as part of an attempt to make businesses in Europe more competitive with rivals in the United States, China and elsewhere. 

The EU’s executive arm has already unveiled packages to simplify rules around sustainability reporting and accessing EU investment. The aim is for companies to waste less time and money on complying with complex legal and regulatory requirements imposed by EU laws…Seven years later, Brussels is taking out the scissors to give its (in)famous privacy law a trim.

There are “a lot of good things about GDPR, [and] privacy is completely necessary. But we don’t need to regulate in a stupid way. We need to make it easy for businesses and for companies to comply,” Danish Digital Minister Caroline Stage Olsen told reporters last week. Denmark will chair the work in the EU Council in the second half of 2025 as part of its rotating presidency.

The criticism of the GDPR echoes the views of former Italian Prime Minister Mario Draghi, who released a landmark economic report last September warning that Europe’s complex laws were preventing its economy from catching up with the United States and China. “The EU’s regulatory stance towards tech companies hampers innovation,” Draghi wrote, singling out the Artificial Intelligence Act and the GDPR…(More)”.

Digital Technologies and Participatory Governance in Local Settings: Comparing Digital Civic Engagement Initiatives During the COVID-19 Outbreak

Curated on Posted on by Stefaan Verhulst

Chapter by Nathalie Colasanti, Chiara Fantauzzi, Rocco Frondizi & Noemi Rossi: “Governance paradigms have undergone a deep transformation during the COVID-19 pandemic, necessitating agile, inclusive, and responsive mechanisms to address evolving challenges. Participatory governance has emerged as a guiding principle, emphasizing inclusive decision-making processes and collaboration among diverse stakeholders. In the outbreak context, digital technologies have played a crucial role in enabling participatory governance to flourish, democratizing participation, and facilitating the rapid dissemination of accurate information. These technologies have also empowered grassroots initiatives, such as civic hacking, to address societal challenges and mobilize communities for collective action. This study delves into the realm of bottom-up participatory initiatives at the local level, focusing on two emblematic cases of civic hacking experiences launched during the pandemic, the first in Wuhan, China, and the second in Italy. Through a comparative lens, drawing upon secondary sources, the aim is to analyze the dynamics, efficacy, and implications of these initiatives, shedding light on the evolving landscape of participatory governance in times of crisis. Findings underline the transformative potential of civic hacking and participatory governance in crisis response, highlighting the importance of collaboration, transparency, and inclusivity…(More)”.

Researching data discomfort: The case of Statistics Norway’s quest for billing data

Curated on Posted on by Stefaan Verhulst

Paper by Lisa Reutter: “National statistics offices are increasingly exploring the possibilities of utilizing new data sources to position themselves in emerging data markets. In 2022, Statistics Norway announced that the national agency will require the biggest grocers in Norway to hand over all collected billing data to produce consumer behavior statistics which had previously been produced by other sampling methods. An online article discussing this proposal sparked a surprisingly (at least to Statistics Norway) high level of interest among readers, many of whom expressed concerns about this intended change in data practice. This paper focuses on the multifaceted online discussions of the proposal, as these enable us to study citizens’ reactions and feelings towards increased data collection and emerging public-private data flows in a Nordic context. Through an explorative empirical analysis of comment sections, this paper investigates what is discussed by commenters and reflects upon why this case sparked so much interest among citizens in the first place. It therefore contributes to the growing literature of citizens’ voices in data-driven administration and to a wider discussion on how to research public feeling towards datafication. I argue that this presents an interesting case of discomfort voiced by citizens, which demonstrates the contested nature of data practices among citizens–and their ability to regard data as deeply intertwined with power and politics. This case also reminds researchers to pay attention to seemingly benign and small changes in administration beyond artificial intelligence…(More)”

Robotics for Global development

Curated on Posted on by Stefaan Verhulst

Report by the Frontier Tech Hub: “Robotics could enable progress on 46% of SDG targets  yet this potential remains largely untapped in low and middle-income countries. 

While technological developments and new-found applications of artificial intelligence (AI) keep captivating significant attention and investments, using robotics to advance the Sustainable Development Goals (SDGs) is consistently overlooked. This is especially true when the focus moves from aerial robotics (drones) to robotic arms, ground robotics, and aquatic robotics. How might these types of robots accelerate global development in the least developed countries? 

We aim to answer this question and inform the UK Foreign, Commonwealth & Development Office’s (FCDO) investment and policy towards robotics in the least developed countries (LDCs). In an emergent space, the UK FCDO has a unique opportunity to position itself as a global leader in leveraging robotics technology to accelerate sustainable development outcomes…(More)”.

Integrating Social Media into Biodiversity Databases: The Next Big Step?

Curated on Posted on by Stefaan Verhulst

Article by Muhammad Osama: “Digital technologies and social media have transformed ecology and conservation biology data collection. Traditional biodiversity monitoring often relies on field surveys, which can be time-consuming and biased toward rural habitats.

The Global Biodiversity Information Facility (GBIF) serves as a key repository for biodiversity data, but it faces challenges such as delayed data availability and underrepresentation of urban habitats.

Social media platforms have become valuable tools for rapid data collection, enabling users to share georeferenced observations instantly, reducing time lags associated with traditional methods. The widespread use of smartphones with cameras allows individuals to document wildlife sightings in real-time, enhancing biodiversity monitoring. Integrating social media data with traditional ecological datasets offers significant advancements, particularly in tracking species distributions in urban areas.

In this paper, the authors evaluated the Jersey tiger moth’s habitat usage by comparing occurrence data from social media platforms (Instagram and Flickr) with traditional records from GBIF and iNaturalist. They hypothesized that social media data would reveal significant JTM occurrences in urban environments, which may be underrepresented in traditional datasets…(More)”.

The Language Data Space (LDS)

Curated on Posted on by Stefaan Verhulst

European Commission: “… welcomes launch of the Alliance for Language Technologies European Digital Infrastructure Consortium (ALT-EDIC) and the Language Data Space (LDS).

Aimed at addressing the shortage of European language data needed for training large language models, these projects are set to revolutionise multilingual Artificial Intelligence (AI) systems across the EU.

By offering services in all EU languages, the initiatives are designed to break down language barriers, providing better, more accessible solutions for smaller businesses within the EU. This effort not only aims to preserve the EU’s rich cultural and linguistic heritage in the digital age but also strengthens Europe’s quest for tech sovereignty. Formed in February 2024, the ALT-EDIC includes 17 participating Member States and 9 observer Member States and regions, making it one of the pioneering European Digital Infrastructure Consortia.

The LDS, part of the Common European Data Spaces, is crucial for increasing data availability for AI development in Europe. Developed by the Commission and funded by the DIGITAL programme,  this project aims to create a cohesive marketplace for language data. This will enhance the collection and sharing of multilingual data to support European large language models. Initially accessible to selected institutions and companies, the project aims to eventually involve all European public and private stakeholders.

Find more information about the Alliance for Language Technologies European Digital Infrastructure Consortium (ALT-EDIC) and the Language Data Space (LDS)…(More)”