Paper by Kimmo Grönlund, Kaisa Herne, Maija Jäske, and Mikko Värttö: “In a deliberative mini-public, a representative number of citizens receive information and discuss given policy topics in facilitated small groups. Typically, mini-publics are most effective politically and can have the most impact on policy-making when they are connected to democratic decision-making processes. Theorists have put forward possible mechanisms that may enhance this linkage, one of which is involving politicians within mini-publics with citizens. However, although much research to date has focussed on mini-publics with many citizen participants, there is little analysis of mini-publics with politicians as coparticipants. In this study, we ask how involving politicians in mini-publics influences both participating citizens’ opinions and citizens’ and politicians’ perceptions of the quality of the mini-public deliberations. We organised an online mini-public, together with the City of Turku, Finland, on the topic of transport planning. The participants (n = 171) were recruited from a random sample and discussed the topic in facilitated small groups (n = 21). Pre- and postdeliberation surveys were collected. The effect of politicians on mini-publics was studied using an experimental intervention: in half of the groups, local politicians (two per group) participated, whereas in the other half, citizens deliberated among themselves. Although we found that the participating citizens’ opinions changed, no trace of differences between the two treatment groups was reported. We conclude that politicians, at least when they are in a clear minority in the deliberating small groups, can deliberate with citizens without negatively affecting internal inclusion and the quality of deliberation within mini-publics….(More)”.
GDPR and the Lost Generation of Innovative Apps
Paper by Rebecca Janßen, Reinhold Kesler, Michael E. Kummer & Joel Waldfogel: “Using data on 4.1 million apps at the Google Play Store from 2016 to 2019, we document that GDPR induced the exit of about a third of available apps; and in the quarters following implementation, entry of new apps fell by half. We estimate a structural model of demand and entry in the app market. Comparing long-run equilibria with and without GDPR, we find that GDPR reduces consumer surplus and aggregate app usage by about a third. Whatever the privacy benefits of GDPR, they come at substantial costs in foregone innovation…(More)”.
The power of data: how Helsinki is improving citizens’ lives
WEF Blog: “New technologies, such as artificial intelligence, internet of things and the metaverse, demand data as the foundational resource for solving systemic challenges, from pandemic response to climate change. Yet despite an abundance of both supply and demand, the evolution from data to insight still presents many challenges.
On the one hand, data often remains siloed within territorial boundaries and corporate environments and is unavailable to benefit people, society and the planet. On the other, the type of governance needed to assure proper oversight, transparency and accountability by those using data is still being understood.
As the data universe expands, it becomes exponentially more complex, requiring solutions that integrate political, economic, social, environmental, technological and, most importantly, human aspects…
Through its partnership with the City of Helsinki, the Forum has convened a global community of technologists, anthropologists and policy and data experts to develop data policy that serves the general public and meets their expectations…(More)”.
Digital Constitutionalism in Europe: Reframing Rights and Powers in the Algorithmic Society
Book by Giovanni De Gregorio: “This book is about rights and powers in the digital age. It is an attempt to reframe the role of constitutional democracies in the algorithmic society. By focusing on the European constitutional framework as a lodestar, this book examines the rise and consolidation of digital constitutionalism as a reaction to digital capitalism. The primary goal is to examine how European digital constitutionalism can protect fundamental rights and democratic values against the charm of digital liberalism and the challenges raised by platform powers. Firstly, this book investigates the reasons leading to the development of digital constitutionalism in Europe. Secondly, it provides a normative framework analysing to what extent European constitutionalism provides an architecture to protect rights and limit the exercise of unaccountable powers in the algorithmic society….(More)”.
Under Construction: Citizen Participation in the European Union
Paper by Dominik Hierlemann: “Four out of five European citizens want to have a bigger say in EU policymaking. Already now, they can participate in the European Union through elections, citizens’ initiatives, consultations, petitions, dialogues, and the Ombudsman. But how well do these participation instruments work? Do citizens know about them? What is their impact on EU policymaking? This study examines seven EU participation instruments in depth. It finds that the EU offers a patchwork of participation instruments that work well in some respects but remain largely unknown and create little impact. To strengthen the voice of European citizens, the EU should move from its participation patchwork to a coherent participation infrastructure. Voting every five years is not enough. A democratically accountable and legitimate EU depends on the ongoing and effective participation of citizens…(More)”.
European Health Union: A European Health Data Space for people and science
Press Release: “Today, the European Commission launched the European Health Data Space (EHDS), one of the central building blocks of a strong European Health Union. The EHDS will help the EU to achieve a quantum leap forward in the way healthcare is provided to people across Europe. It will empower people to control and utilise their health data in their home country or in other Member States. It fosters a genuine single market for digital health services and products. And it offers a consistent, trustworthy and efficient framework to use health data for research, innovation, policy-making and regulatory activities, while ensuring full compliance with the EU’s high data protection standards…
Putting people in control of their own health data, in their country and cross-border
- Thanks to the EHDS, people will have immediate, and easy access to the data in electronic form, free of charge. They can easily share these data with other health professionals in and across Member States to improve health care delivery. Citizens will be in full control of their data and will be able to add information, rectify wrong data, restrict access to others and obtain information on how their data are used and for which purpose.
- Member States will ensure that patient summaries, ePrescriptions, images and image reports, laboratory results, discharge reports are issued and accepted in a common European format.
- Interoperability and security will become mandatory requirements. Manufacturers of electronic health record systems will need to certify compliance with these standards.
- To ensure that citizens’ rights are safeguarded, all Member States have to appoint digital health authorities. These authorities will participate in the cross-border digital infrastructure (MyHealth@EU) that will support patients to share their data across borders.
Improving the use of health data for research, innovation and policymaking
- The EHDS creates a strong legal framework for the use of health data for research, innovation, public health, policy-making and regulatory purposes. Under strict conditions, researchers, innovators, public institutions or industry will have access to large amounts of high-quality health data, crucial to develop life-saving treatments, vaccines or medical devices and ensuring better access to healthcare and more resilient health systems.
- The access to such data by researchers, companies or institutions will require a permit from a health data access body, to be set up in all Member States. Access will only be granted if the requested data is used for specific purposes, in closed, secure environments and without revealing the identity of the individual. It is also strictly prohibited to use the data for decisions, which are detrimental to citizens such as designing harmful products or services or increasing an insurance premium.
- The health data access bodies will be connected to the new decentralised EU-infrastructure for secondary use (HealthData@EU) which will be set up to support cross-border projects…(More)”
How does research data generate societal impact?
Blog by Eric Jensen and Mark Reed: “Managing data isn’t exciting and it can feel like a hassle to deposit data at the end of a project, when you want to focus on publishing your findings.
But if you want your research to have impact, paying attention to data could make a big difference, according to new research we published recently in the journal PLOS ONE.
We analysed case studies from the UK Research Excellence Framework (REF) exercise in 2014 to show how data analysis and curation can generate benefits for policy and practice, and sought to understand the pathways through which data typically leads to impact. In this series of blog posts we will unpack this research and show you how you can manage your data for impact.
We were commissioned by the Australian Research Data Commons (ARDC) to investigate how research data contributes to demonstrable non-academic benefits to society from research, drawing on existing impact case studies from the REF. We then analyzed case studies from the Australian Research Council (ARC) Engagement and Impact Assessment 2018, a similar exercise to the UK’s…
The most prevalent type of research data-driven impact was benefits for professional practice (45% UK; 44% Australia).
This category of impact includes changing the ways professionals operate and improving the quality of products or services through better methods, technologies, and responses to issues through better understanding. It also includes changing organisational culture and improving workplace productivity or outcomes.
Government impacts were the next most prevalent category identified in this research (21% UK; 20% Australia).
These impacts include the introduction of new policies and changes to existing policies, as well as
- reducing the cost to deliver government services
- enhancing the effectiveness or efficiency of government services and operations
- more efficient government planning
Other relatively common types of research data-driven impacts were economic impact (13% UK; 14% Australia) and public health impacts (10% UK; 8% Australia)…(More)”.
Democratic Progress in the 21st Century
Blog by the “Democratic Progress” Task force: “There appears to be distrust between citizens and governing officials at all levels, from local municipalities to regional and even national governments. The rapid transformation brought about by digital technologies, from the way we work to where we work, is instilling anxiety and uncertainty in the minds of our population. The fact is that the “business models” and way of doing business has shifted for all, whether you are in government, corporate, and even academia.
Despite their best efforts to innovate and embrace this transformation, the operational systems and processes in place are inefficient and ineffective in doing so, resulting in the digital divide. This divide just increases fear and uncertainty, leading to governments relying on populist views to garner votes, further polarizing rather than uniting nations.
New democratic forms and institutions, in general, can help liberal democracies overcome the challenges highlighted. We will need to build more collaborations, partnerships, and dialogues with a range of stakeholders (SDG17 SDG16 SDG8) so that we may consider more viewpoints on a number of levels and embrace this transition collectively.
This is where the potential of digital ecosystems (communities), which are primarily represented by coworking spaces, creative hubs, and youth centres, are critical platforms for enabling this shift becomes important. The creation of an enabling environment in which diverse stakeholders (government, corporate, academia, and civil society) can collaborate to accelerate social tech entrepreneurs and digital technologies while holding open and inclusive dialogues about social challenges, cultural, and democratic experiences would be a key focus for this.
The Conference on the Future of Europe has taken a significant step in this direction; now we must bring together and elevate the voices of our citizens and digital ecosystem players to ensure that we create an inclusive and enabling environment that embraces citizens’ needs in the digital transformation and closes the digital divide. The goal of these platforms is to facilitate true contact between citizens and decision-makers, which will aid in the resolution of social issues and the restoration of confidence in our society…(More)”
The Issue of Proxies and Choice Architectures. Why EU Law Matters for Recommender Systems
Paper by Mireille Hildebrandt: “Recommendations are meant to increase sales or ad revenue, as these are the first priority of those who pay for them. As recommender systems match their recommendations with inferred preferences, we should not be surprised if the algorithm optimizes for lucrative preferences and thus co-produces the preferences they mine. This relates to the well-known problems of feedback loops, filter bubbles, and echo chambers. In this article, I discuss the implications of the fact that computing systems necessarily work with proxies when inferring recommendations and raise a number of questions about whether recommender systems actually do what they are claimed to do, while also analysing the often-perverse economic incentive structures that have a major impact on relevant design decisions. Finally, I will explain how the choice architectures for data controllers and providers of AI systems as foreseen in the EU’s General Data Protection Regulation (GDPR), the proposed EU Digital Services Act (DSA) and the proposed EU AI Act will help to break through various vicious circles, by constraining how people may be targeted (GDPR, DSA) and by requiring documented evidence of the robustness, resilience, reliability, and the responsible design and deployment of high-risk recommender systems (AI Act)…(More)”.
Better, broader, safer: using health data for research and analysis
The Goldacre Review: “This review was tasked with finding ways to deliver better, broader, safer use of NHS data for analysis and research: more specifically, it was asked to identify the strategic or technical blockers to such work, and how they can be practically overcome. It was commissioned to inform, and sit alongside, the NHS Data Strategy. The recommendations are derived from extensive engagement with over 300 individuals, 8 focus groups, 100 written submissions, substantial desk research, and detailed discussion with our SSG….
In the past ‘data infrastructure’ meant beige boxes in large buildings. In the 21st century, data infrastructure is code, and people with skills. As noted in previous reviews, many shortcomings in the system have been driven by a ‘destructive impatience’: constantly chasing small, isolated, short-term projects at the expense of building a coherent system that can deliver faster, better, safer outputs for all users of data.
If we invest in platforms and curation – at less than the cost of digitising one hospital – and engage robustly with the technical challenges, then we can rapidly capitalise on our skills and data. New analysts, academics and innovators will arrive to find accessible platforms, with well curated data and accessible technical documentation. The start-up time for each new project will shrink, productivity will rocket, and lives will be saved.
Seventy-three years of complete NHS patient records contain all the noise from millions of lifetimes. Perfect, subtle signals can be coaxed from this data, and those signals go far beyond mere academic curiosity. They represent deeply buried treasure that can help prevent suffering and death around the planet on a biblical scale. It is our collective duty to make this work…(More)”.