The Patient, Data Protection and Changing Healthcare Models


Book by Griet Verhenneman on The Impact of e-Health on Informed Consent, Anonymisation and Purpose Limitation: “Healthcare is changing. It is moving to a paperless environment and becoming a team-based, interdisciplinary and patient-centred profession. Modern healthcare models reflect our data-driven economy, and adopt value-driven strategies, evidence-based medicine, new technology, decision support and automated decision-making. Amidst these changes are the patients, and their right to data protection, privacy and autonomy. The question arises of how to match phenomena that characterise the predominant ethos in modern healthcare systems, such as e-health and personalised medicine, to patient autonomy and data protection laws. That matching exercise is essential. The successful adoption of ICT in healthcare depends, at least partly, on how the public’s concerns about data protection and confidentiality are addressed.

Three backbone principles of European data protection law are considered to be bottlenecks for the implementation of modern healthcare systems: informed consent, anonymisation and purpose limitation. This book assesses the adequacy of these principles and considers them in the context of technological and societal evolutions. A must-read for every professional active in the field of data protection law, health law, policy development or IT-driven innovation…(More)”.

Proposal for a European Interoperability Framework for Smart Cities and Communities (EIF4SCC) published


Article by Nóirín Ní Earcáin: “In recognition of the importance of interoperability and the specific challenges it presents in a city context, The Commission (DG DIGIT and DG CONNECT) appointed Deloitte and KU Leven to prepare a Proposal for a European Interoperability Framework for Smart Cities and Communities. While an EIF for eGovernment has been in place since 2010, this is the first time the concepts and ideas developed there have been adapted to the local context.

The aim of the EIF4SCC is to provide EU local administration leaders with definitions, principles, recommendations, practical use cases drawn from cities and communities from around Europe and beyond, and a common model to facilitate delivery of services to the public across domains, cities, regions and borders.

The framework was developed by building on and finding complementarities with previous and ongoing initiatives, such as the Living-in.EU movement, the 2017 European Interoperability Framework (EIF), the Minimal Interoperability Mechanisms (MIMs Plus) and the outcomes of EU funded initiatives (e.g.Connecting Europe Facility (CEF) Digital Building BlocksSmart Cities MarketplaceIntelligent Cities ChallengeDigital Transition Partnership under the Urban Agenda) and EU funded projects (SynchronicityTriangulum, etc.).

Why do cities and communities need interoperability?

The EIF4SCC is targeted at EU local administration leaders and aims to provide a generic framework of interoperability of all types, and how it can contribute to the development of a Smart(er) City/Community. This will pave the way for services for citizens and business to be offered not only in a single city, but also across cities, regions and across borders.

European Interoperability Framework for Smart Cities and Communities

The EIF4SCC includes three concepts (interoperability, smart city or community, EIF4SCC), five principles (drawing on the Living-in.EU declaration), and seven elements (consisting of the five components of interoperability, one cross-cutting layer – Integrated Service Governance, and a foundational layer of Interoperability Governance)….The European Commission encourages local administrations at regional, city and community level to review the Proposed EIF4SCC, and the accompanying Final Study Report which details the methodology, literature review, and stakeholder engagement process undertaken. It will be discussed through the Living-in.EU community and other fora, with a view to its adoption as an official Commission document, based on users’ and stakeholders’ feedback…(More)”.

Helsinki invites cyclists to collect data on street conditions and earn money


Article at the Mayor.eu: “From Saturday 10 July, cyclists in Helsinki will be able to earn money doing what they love whilst simultaneously helping the municipality repair damaged streets. This was announced on 28 June when the City of Helsinki shared that all residents are invited to take part in a game to map out 300 kilometres of cycling paths in the capital.

In a press release, the City of Helsinki reports that anyone can participate as long as they have a bicycle and a smartphone. To take part, one must simply download the free application Crowdchupa and attach their phone to their bicycle. The device will then record footage of the streets and Artificial Intelligence will be used to identify damage that must be repaired.

To make this even more interesting, the Crowdchupa application will allow participants to earn money. The application features a map which depicts various objects (such as coins and berries) on the streets. Cyclists must drive over these virtual objects to collect them and earn money….(More)”.

Human behaviour: what scientists have learned about it from the pandemic


Stephen Reicher at The Conversation: “During the pandemic, a lot of assumptions were made about how people behave. Many of those assumptions were wrong, and they led to disastrous policies.

Several governments worried that their pandemic restrictions would quickly lead to “behavioural fatigue” so that people would stop adhering to restrictions. In the UK, the prime minister’s former chief adviser Dominic Cummings recently admitted that this was the reason for not locking down the country sooner.

Meanwhile, former health secretary Matt Hancock revealed that the government’s failure to provide financial and other forms of support for people to self-isolate was down to their fear that the system “might be gamed”. He warned that people who tested positive may then falsely claim that they had been in contact with all their friends, so they could all get a payment.

These examples show just how deeply some governments distrust their citizens. As if the virus was not enough, the public was portrayed as an additional part of the problem. But is this an accurate view of human behaviour?

The distrust is based on two forms of reductionism – describing something complex in terms of its fundamental constituents. The first is limiting psychology to the characteristics – and more specifically the limitations – of individual minds. In this view the human psyche is inherently flawed, beset by biases that distort information. It is seen as incapable of dealing with complexity, probability and uncertainty – and tending to panic in a crisis.

This view is attractive to those in power. By emphasising the inability of people to govern themselves, it justifies the need for a government to look after them. Many governments subscribe to this view, having established so-called nudge units – behavioural science teams tasked with subtly manipulating people to make the “right” decisions, without them realising why, from eating less sugar to filing their taxes on time. But it is becoming increasingly clear that this approach is limited. As the pandemic has shown, it is particularly flawed when it comes to behaviour in a crisis.

In recent years, research has shown that the notion of people panicking in a crisis is something of a myth. People generally respond to crises in a measured and orderly way – they look after each other.

The key factor behind this behaviour is the emergence of a sense of shared identity. This extension of the self to include others helps us care for those around us and expect support from them. Resilience cannot be reduced to the qualities of individual people. It tends to be something that emerges in groups.

Another type of reductionism that governments adopt is “psychologism” – when you reduce the explanation of people’s behaviour to just psychology…(More)”.

COVID data is complex and changeable – expecting the public to heed it as restrictions ease is optimistic


Manuel León Urrutia at The Conversation: “I find it tempting to celebrate the public’s expanding access to data and familiarity with terms like “flattening the curve”. After all, a better informed society is a successful society, and the provision of data-driven information to the public seems to contribute to the notion that together we can beat COVID.

But increased data visibility shouldn’t necessarily be interpreted as increased data literacy. For example, at the start of the pandemic it was found that the portrayal of COVID deaths in logarithmic graphs confused the public. Logarithmic graphs control for data that’s growing exponentially by using a scale which increases by a factor of ten on the y, or vertical axis. This led some people to radically underestimate the dramatic rise in COVID cases.

Two graphs comparing linear with logorithmic curves
A logorithmic graph (on the right) flattens exponential curves, which can confuse the public. LSE

The vast amount of data we now have available doesn’t even guarantee consensus. In fact, instead of solving the problem, this data deluge can contribute to the polarisation of public discourseOne study recently found that COVID sceptics use orthodox data presentation techniques to spread their controversial views, revealing how more data doesn’t necessarily result in better understanding. Though data is supposed to be objective and empirical, it has assumed a political, subjective hue during the pandemic….

This is where educators come in. The pandemic has only strengthened the case presented by academics for data literacy to be included in the curriculum at all educational levels, including primary. This could help citizens navigate our data-driven world, protecting them from harmful misinformation and journalistic malpractice.

Data literacy does in fact already feature in many higher education roadmaps in the UK, though I’d argue it’s a skill the entire population should be equipped with from an early age. Misconceptions about vaccine efficacy and the severity of the coronavirus are often based on poorly presented, false or misinterpreted data. The “fake news” these misconceptions generate would spread less ferociously in a world of data literate citizens.

To tackle misinformation derived from the current data deluge, the European Commission has funded projects such as MediaFutures and YourDataStories….(More)”.

Turning data into public value: European lessons on unleashing the transformative power of city data


Paper by Anushri Gupta and Luca Mora: “The age of big data and smart city technologies provides city governments with unprecedented potential for data-driven decision making. Committed to constantly developing new urban policy and supporting urban operations, city governments have been using data describing the functioning of urban infrastructure assets and public services for a very long time. However, the widespread diffusion of digital systems has now created a remarkable new window of opportunity.


With many digital solutions being introduced into the built environment to improve the sustainability of urban sociotechnical systems, enormous amounts of data are constantly generated at the city level, and at unprecedented speed. City surveillance cameras, government applications for public services, building automation systems, intelligent transport systems, and smart grids are some examples of digital technologies which are contributing to producing an exhaustive stream of data “that can be harnessed to provide urban intelligence and reshape the practices and processes of public administrations”, creating a fertile environment for innovation and entrepreneurial activity. When attempting to tap into these large streams of city data, however, the opportunity to deliver sustainable value is met with significant sociotechnical challenges, which undermine the capability of urban development actors….(More)”.

Analytical modelling and UK Government policy


Paper by Marie Oldfield & Ella Haig:  “In the last decade, the UK Government has attempted to implement improved processes and procedures in modelling and analysis in response to the Laidlaw report of 2012 and the Macpherson review of 2013. The Laidlaw report was commissioned after failings during the Intercity West Coast Rail (ICWC) Franchise procurement exercise by the Department for Transport (DfT) that led to a legal challenge of the analytical models used within the exercise. The Macpherson review looked into the quality assurance of Government analytical models in the context of the experience with the Intercity West Coast franchise competition. This paper examines what progress has been made in the 8 years since the Laidlaw report in model building and best practise in government and proposes several recommendations for ways forward. This paper also discusses the Lords Science and Technology Committees of June 2020 that analysed the failings in the modelling of COVID. Despite going on to influence policy, many of the same issues raised within the Laidlaw and Macpherson Reports were also present in the Lords Science and Technology Committee enquiry. We examine the technical and organisational challenges to progress in this area and make recommendations for a way forward….(More)”.

New knowledge environments. On the possibility of a citizen social science.


Article by Joseph Perelló: “Citizen science is in a process of consolidation, with a wide variety of practices and perspectives. Social sciences and humanities occupy a small space despite the obvious social dimension of citizen science. In this sense, citizen social science can enrich the concept of citizen science both because the research objective can also be of a social nature and because it provides greater reflection on the active participation of individuals, groups, or communities in research projects. Based on different experiences, this paper proposes that citizen social science should have the capacity to empower participants and provide them with skills to promote collective actions or public policies based on a co-created knowledge.

Citizen science is commonly recognised as the participation of the public in scientific research (Vohland et al., 2021). It has been promoted as a way to collect massive amounts of data and accelerate its processing, while also raising awareness and spreading knowledge and a better understanding of both scientific methods and the social relevance of results (Parrish et al., 2019). Some researchers support the idea of maintaining the generality and vagueness of the term citizen science (Auerbach et al., 2019), due to the youth of the discipline and the different ways it can be understood (Haklay et al., 2020). Such diversity can be considered positively, as a way to enrich citizen science and, more generally, as a catalyst for the emergence of trans-disciplinary and transformative science.

The sociologist Alan Irwin, one of the authors to whom we owe the concept, already said over 25 years ago: «Citizen Science evokes a science which assists the needs and concerns of citizens» (Irwin, 1995, p. xi). The book argues that citizens can create reliable knowledge. However, decades later, the number of contributions using the term citizen science in social sciences and humanities is scarce, smaller than the number of items published in environmental sciences or biology, which predominate in the field (Kullenberg & Kasperowski, 2016). Nevertheless, there is a growing consensus that social sciences and humanities are necessary for citizen science to reach maturity, both so that the object of study can also be of a social nature, and also so that these disciplines can provide a more elaborate reflection on participation in citizen science projects (Tauginienė et al., 2020)….(More)”.

How laws affect the perception of norms: empirical evidence from the lockdown


Paper by Roberto Galbiati, Emeric Henry, Nicolas Jacquemet, and Max Lobeck: “Laws not only affect behavior due to changes in material payoffs, but they may also change the perception individuals have of societal norms, either by shifting them directly or by providing information on these norms. Using detailed daily survey data and exploiting the introduction of lockdown measures in the UK in the context of the COVID-19 health crisis, we provide causal evidence that the law drastically changed the perception of the norms regarding social distancing behaviors. We show this effect of laws on perceived norms is mostly driven by an informational channel….(More)”.

Disrupting the Welfare State? Digitalisation and the Retrenchment of Public Sector Capacity


Paper by Rosie Collington: “Welfare state bureaucracies the world over have adopted far-reaching digitalisation reforms in recent years. From the deployment of AI in service management, to the ‘opening up’ of administrative datasets, digitalisation initiatives have uprooted established modes of public sector organisation and administration. And, as this paper suggests, they have also fundamentally transformed the political economy of the welfare state. Through a case study of Danish reforms between 2002 and 2019, the analysis finds that public sector digitalisation has entailed the transfer of responsibility for key infrastructure to private actors. Reforms in Denmark have not only been pursued in the name of public sector improvement and efficiency. A principal objective of public sector digitalisation has rather been the growth of Denmark’s nascent digital technology industries as part of the state’s wider export-led growth strategy, adopted in response to functional pressures on the welfare state model. The attempt to deliver fiscal stability in this way has, paradoxically, produced retrenchment of critical assets and capabilities. The paper’s findings hold important implications for states embarking on public sector digitalisation reforms, as well as possibilities for future research on how states can harness technological progress in the interests of citizens – without hollowing out in the process….(More)”.