Are Requirements to Deposit Data in Research Repositories Compatible With the European Union’s General Data Protection Regulation?

Curated on Posted on by Stefaan Verhulst

Paper by Deborah Mascalzoni et al: “To reproduce study findings and facilitate new discoveries, many funding bodies, publishers, and professional communities are encouraging—and increasingly requiring—investigators to deposit their data, including individual-level health information, in research repositories. For example, in some cases the National Institutes of Health (NIH) and editors of some Springer Nature journals require investigators to deposit individual-level health data via a publicly accessible repository (1, 2). However, this requirement may conflict with the core privacy principles of European Union (EU) General Data Protection Regulation 2016/679 (GDPR), which focuses on the rights of individuals as well as researchers’ obligations regarding transparency and accountability.

The GDPR establishes legally binding rules for processing personal data in the EU, as well as outside the EU in some cases. Researchers in the EU, and often their global collaborators, must comply with the regulation. Health and genetic data are considered special categories of personal data and are subject to relatively stringent rules for processing….(More)”.

State Capability, Policymaking and the Fourth Industrial Revolution

Curated on Posted on by Stefaan Verhulst

Demos Helsinki: “The world as we know it is built on the structures of the industrial era – and these structures are falling apart. Yet the vision of a new, sustainable and fair post-industrial society remains unclear. This discussion paper is the result of a collaboration between a group of organisations interested in the implications of the rapid technological development to policymaking processes and knowledge systems that inform policy decisions.

In the discussion paper, we set out to explore what the main opportunities and concerns that accompany the Fourth Industrial Revolution for policymaking and knowledge systems are particularly in middle-income countries. Overall, middle-income countries are home to five billion of the world’s seven billion people and 73 per cent of the world’s poor people; they represent about one-third of the global Gross Domestic Product (GDP) and are major engines of global growth (World Bank 2018).

The paper is co-produced with Capability (Finland), Demos Helsinki (Finland), HELVETAS Swiss Intercooperation (Switzerland), Politics & Ideas (global), Southern Voice (global), UNESCO Montevideo (Uruguay) and Using Evidence (Canada).

The guiding questions for this paper are:

– What are the critical elements of the Fourth Industrial Revolution?

– What does the literature say about the impact of this revolution on societies and economies, and in particular on middle-income countries?

– What are the implications of the Fourth Industrial Revolution for the achievement of the Sustainable Development Goals (SDGs) in middle-income countries?

– What does the literature say about the challenges for governance and the ways knowledge can inform policy during the Fourth Industrial Revolution?…(More)”.

Full discussion paper:  “State Capability, Policymaking and the Fourth Industrial Revolution: Do Knowledge Systems Matter?”

…

Co-Creating e-Government Services: An Empirical Analysis of Participation Methods in Belgium

Curated on Posted on by Stefaan Verhulst

Paper by Anthony Simonofski, Monique Snoeck and Benoît Vanderose: “As citizens have more and more opportunities to participate in public life, it is essential that administrations integrate this participation in their e-government processes. A smarter, more participatory, governance is a well-recognized and essential part of any city that wants to become “Smart” and generate public value. In this chapter, we will focus on the impact of this participatory approach on the development of e-government services by the city. Therefore, the goal of this chapter is to identify which methods administrations can apply to co-create their egovernment services with citizens and to understand the gap between the methods used in practice and citizens’ preferences.

As citizens have more and more opportunities to participate in public life, it is essential that administrations integrate this participation in their e-government processes. A smarter, more participatory, governance is a well-recognized and essential part of any city that wants to become “Smart” and generate public value. In this chapter, we will focus on the impact of this participatory approach on the development of e-government services by the city. Therefore, the goal of this chapter is to identify which methods administrations can apply to co-create their e-government services with citizens and to understand the gap between the methods used in practice and citizens’ preferences.

This chapter contributes to research and practice in different ways. First, the literature review allows the identification of eight participation methods to co-create e-government services. Second, we further examine these methods by means of 28 in-depth interviews, a questionnaire sent to public servants and a questionnaire sent to citizens. This multi-method approach allows identifying the barriers and drivers of public servants regarding the co-creation of e-government services but also the citizens’ perception of these methods. By contrasting the identified methods with their implementation, we better understand the discrepancies between literature and practice. At the same time, this chapter will give practitioners a repository of participation methods as well as information about the perception public servants and citizens have of them. Finally, we expect the insights provided in this chapter will stimulate research on the practical use of all these different methods…(More)”

The Lancet Countdown: Tracking progress on health and climate change using data from the International Energy Agency (IEA)

Curated on Posted on by Stefaan Verhulst

Victoria Moody at the UK Data Service: “The 2015 Lancet Commission on Health and Climate Change—which assessed responses to climate change with a view to ensuring the highest attainable standards of health for populations worldwide—concluded that “tackling climate change could be the greatest global health opportunity of the 21st century”. The Commission recommended that more accurate national quantification of the health co-benefits and economic impacts of mitigation decisions was essential in promoting a low-carbon transition.

Building on these foundations, the Lancet Countdown: tracking progress on health and climate change was formed as an independent research collaboration…

The partnership comprises 24 academic institutions from every continent, bringing together individuals with a broad range of expertise across disciplines (including climate scientists, ecologists, mathematicians, geographers, engineers, energy, food, and transport experts, economists, social and political scientists, public health professionals, and physicians).

Four of the indicators developed for Working Group 3 (Mitigation actions and health co-benefits) uses International Energy Agency (IEA) data made available by the the IEA via the UK Data Service for use by researchers, learners and teaching staff in UK higher and further education. Additionally, two of the indicators developed for Working Group 4 (Finance and economics) also use IEA data.

Read our impact case study to find our more about the impact and reach of the Lancet Countdown, watch the YouTube film below, read the Lancet Countdown 2018 Report …(More)”

https://web.archive.org/web/2000/https://www.youtube.com/watch?v=moYzcYNX1iM

Twentieth Century Town Halls: Architecture of Democracy

Curated on Posted on by Stefaan Verhulst

Book by Jon Stewart: “This is the first book to examine the development of the town hall during the twentieth century and the way in which these civic buildings have responded to the dramatic political, social and architectural changes which took place during the period. Following an overview of the history of the town hall as a building type, it examines the key themes, variations and lessons which emerged during the twentieth century. This is followed by 20 case studies from around the world which include plans, sections and full-colour illustrations. Each of the case studies examines the town hall’s procurement, the selection of its architect and the building design, and critically analyses its success and contribution to the type’s development. The case studies include:

Copenhagen Town Hall, Denmark, Martin Nyrop

Stockholm City Hall, Sweden, Ragnar Ostberg

Hilversum Town Hall, the Netherlands, Willem M. Dudok

Walthamstow Town Hall, Britain, Philip Dalton Hepworth

Oslo Town Hall, Norway, Arnstein Arneberg and Magnus Poulsson

Casa del Fascio, Como, Italy, Guiseppe Terragni

Aarhus Town Hall, Denmark, Arne Jacobsen with Eric Moller

Saynatsalo Town Hall, Finland, Alvar Aalto

Kurashiki City Hall, Japan, Kenzo Tange

Toronto City Hall, Canada, Viljo Revell

Boston City Hall, USA, Kallmann, McKinnell and Knowles

Dallas City Hall, USA, IM Pei

Mississauga City Hall, Canada, Ed Jones and Michael Kirkland

Borgoricco Town Hall, Italy, Aldo Rossi

Reykjavik City Hall, Iceland, Studio Granda

Valdelaguna Town Hall, Spain, Victor Lopez Cotelo and Carlos Puente Fernandez

The Hague City Hall, the Netherlands, Richard Meier

Iragna Town Hall, Switzerland, Raffaele Cavadini

Murcia City Hall, Spain, Jose Rafael Moneo

London City Hall, UK, Norman Foster…(More)”.

Index: Trust in Institutions 2019

Curated on Posted on by Michelle Winowatan

By Michelle Winowatan, Andrew J. Zahuranec, Andrew Young, Stefaan Verhulst

The Living Library Index – inspired by the Harper’s Index – provides important statistics and highlights global trends in governance innovation. This installment focuses on trust in institutions.

Please share any additional, illustrative statistics on open data, or other issues at the nexus of technology and governance, with us at info@thelivinglib.org

Global Trust in Public Institutions

Trust in Government

United States

  • Americans who say their democracy is working at least “somewhat well:” 58% – 2018
  • Number who believe sweeping changes to their government are needed: 61% – 2018
  • Percentage of Americans expressing faith in election system security: 45% – 2018
  • Percentage of Americans expressing an overarching trust in government: 40% – 2019
  • How Americans would rate the trustworthiness of Congress: 4.1 out of 10 – 2017
  • Number who have confidence elected officials act in the best interests of the public: 25% – 2018
  • Amount who trust the federal government to do what is right “just about always or most of the time”: 18% – 2017
  • Americans with trust and confidence in the federal government to handle domestic problems: 2 in 5 – 2018
    • International problems: 1 in 2 – 2018
  • US institution with highest amount of confidence to act in the best interests of the public: The Military (80%) – 2018
  • Most favorably viewed level of government: Local (67%) – 2018
  • Most favorably viewed federal agency: National Park Service (83% favorable) – 2018
  • Least favorable federal agency: Immigration and Customs Enforcement (47% unfavorable) – 2018

United Kingdom

  • Overall trust in government: 42% – 2019
    • Number who think the country is headed in the “wrong direction:” 7 in 10 – 2018
    • Those who have trust in politicians: 17% – 2018
    • Amount who feel unrepresented in politics: 61% – 2019
    • Amount who feel that their standard of living will get worse over the next year: Nearly 4 in 10 – 2019
  • Trust the national government handling of personal data:

European Union

Africa

Latin America

Other

Trust in Media

  • Percentage of people around the world who trust the media: 47% – 2019
    • In the United Kingdom: 37% – 2019
    • In the United States: 48% – 2019
    • In China: 76% – 2019
  • Rating of news trustworthiness in the United States: 4.5 out of 10 – 2017
  • Number of citizens who trust the press across the European Union: Almost 1 in 2 – 2019
  • France: 3.9 out of 10 – 2019
  • Germany: 4.8 out of 10 – 2019
  • Italy: 3.8 out of 10 – 2019
  • Slovenia: 3.9 out of 10 – 2019
  • Percentage of European Union citizens who trust the radio: 59% – 2017
    • Television: 51% – 2017
    • The internet: 34% – 2017
    • Online social networks: 20% – 2017
  • EU citizens who do not actively participate in political discussions on social networks because they don’t trust online social networks: 3 in 10 – 2018
  • Those who are confident that the average person in the United Kingdom can tell real news from ‘fake news’: 3 in 10 – 2018

Trust in Business

Sources

Impact of a nudging intervention and factors associated with vegetable dish choice among European adolescents

Curated on Posted on by Stefaan Verhulst

Paper by Q. Dos Santos et al: “To test the impact of a nudge strategy (dish of the day strategy) and the factors associated with vegetable dish choice, upon food selection by European adolescents in a real foodservice setting.

A cross-sectional quasi-experimental study was implemented in restaurants in four European countries: Denmark, France, Italy and United Kingdom. In total, 360 individuals aged 12-19 years were allocated into control or intervention groups, and asked to select from meat-based, fish-based, or vegetable-based meals. All three dishes were identically presented in appearance (balls with similar size and weight) and with the same sauce (tomato sauce) and side dishes (pasta and salad). In the intervention condition, the vegetable-based option was presented as the “dish of the day” and numbers of dishes chosen by each group were compared using the Pearson chi-square test. Multivariate logistic regression analysis was run to assess associations between choice of vegetable-based dish and its potential associated factors (adherence to Mediterranean diet, food neophobia, attitudes towards nudging for vegetables, food choice questionnaire, human values scale, social norms and self-estimated health, country, gender and belonging to control or intervention groups). All analyses were run in SPSS 22.0.

The nudging strategy (dish of the day) did not show a difference on the choice of the vegetable-based option among adolescents tested (p = 0.80 for Denmark and France and p = 0.69 and p = 0.53 for Italy and UK, respectively). However, natural dimension of food choice questionnaire, social norms and attitudes towards vegetable nudging were all positively associated with the choice of the vegetable-based dish. Being male was negatively associated with choosing the vegetable-based dish.

The “dish of the day” strategy did not work under the study conditions. Choice of the vegetable-based dish was predicted by natural dimension, social norms, gender and attitudes towards vegetable nudging. An understanding of factors related to choosing vegetable based dishes is necessary for the development and implementation of public policy interventions aiming to increase the consumption of vegetables among adolescents….(More)”

Facebook could be forced to share data on effects to the young

Curated on Posted on by Stefaan Verhulst

Nicola Davis at The Guardian: “Social media companies such as Facebook and Twitter could be required by law to share data with researchers to help examine potential harms to young people’s health and identify who may be at risk.

Surveys and studies have previously suggested a link between the use of devices and networking sites and an increase in problems among teenagers and younger children ranging from poor sleep to bullying, mental health issues and grooming.

However, high quality research in the area is scarce: among the conundrums that need to be looked at are matters of cause and effect, the size of any impacts, and the importance of the content of material accessed online.

According to a report by the Commons science and technology committee on the effects of social media and screen time among young people, companies should be compelled to protect users and legislation was needed to enable access to data for high quality studies to be carried out.

The committee noted that the government had failed to commission such research and had instead relied on requesting reviews of existing studies. This was despite a 2017 green paper that set out a consultation process on aUK internet safety strategy.

“We understand [social media companies’] eagerness to protect the privacy of users but sharing data with bona fide researchers is the only way society can truly start to understand the impact, both positive and negative, that social media is having on the modern world,” said Norman Lamb, the Liberal Democrat MP who chairs the committee. “During our inquiry, we heard that social media companies had openly refused to share data with researchers who are keen to examine patterns of use and their effects. This is not good enough.”

Prof Andrew Przybylski, the director of research at the Oxford Internet Institute, said the issue of good quality research was vital, adding that many people’s perception of the effect of social media is largely rooted in hype.

“Social media companies must participate in open, robust, and transparent science with independent scientists,” he said. “Their data, which we give them, is both their most valuable resource and it is the only means by which we can effectively study how these platforms affect users.”…(More)”

“Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

Curated on Posted on by Stefaan Verhulst

Paper by Jessica Stockdale, Jackie Cassell and Elizabeth Ford: “The use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK, and technological innovation in analytical methods for new discoveries using these data resources is developing quickly. Data scientists have developed, and are improving, many ways to extract and process information in medical records. This continues to lead to an exciting range of health related discoveries, improving population health and saving lives. Nevertheless, as the development of analytic technologies accelerates, the decision-making and governance environment as well as public views and understanding about this work, has been lagging behind1.

Public opinion and data use

A range of small studies canvassing patient views, mainly in the USA, have found an overall positive orientation to the use of patient data for societal benefit2–7. However, recent case studies, like NHS England’s ill-fated Care.data scheme, indicate that certain schemes for secondary data use can prove unpopular in the UK. Launched in 2013, Care.data aimed to extract and upload the whole population’s general practice patient records to a central database for prevalence studies and service planning8. Despite the stated intention of Care.data to “make major advances in quality and patient safety”8, this programme was met with a widely reported public outcry leading to its suspension and eventual closure in 2016. Several factors may have been involved in this failure, from the poor public communication about the project, lack of social licence9, or as pressure group MedConfidential suggests, dislike of selling data to profit-making companies10. However, beyond these specific explanations for the project’s failure, what ignited public controversy was a concern with the impact that its aim to collect and share data on a large scale might have on patient privacy. The case of Care.data indicates a reluctance on behalf of the public to share their patient data, and it is still not wholly clear whether the public are willing to accept future attempts at extracting and linking large datasets of medical information. The picture of mixed opinion makes taking an evidence-based position, drawing on social consensus, difficult for legislators, regulators, and data custodians who may respond to personal or media generated perceptions of public views. However, despite differing results of studies canvassing public views, we hypothesise that there may be underlying ethical principles that could be extracted from the literature on public views, which may provide guidance to policy-makers for future data-sharing….(More)”.

Looking after and using data for public benefit

Curated on Posted on by Stefaan Verhulst

Heather Savory at the Office for National Statistics (UK): “Official Statistics are for the benefit of society and the economy and help Britain to make better decisions. They allow the formulation of better public policy and the effective measurement of those policies. They inform the direction of economic and commercial activities. They provide valuable information for analysts, researchers, public and voluntary bodies. They enable the public to hold organisations that spend public money to account, thus informing democratic debate.

The ability to harness the power of data is critical in enabling official statistics to support the most important decisions facing the country.

Under the new powers in the Digital Economy Act , ONS can now gain access to new and different sources of data including ‘administrative’ data from government departments and commercial data. Alongside the availability of these new data sources ONS is experiencing a strong demand for ad hoc insights alongside our traditional statistics.

We need to deliver more, faster, finer-grained insights into the economy and society. We need to deliver high quality, trustworthy information, on a faster timescale, to help decision-making. We will increasingly develop innovative data analysis methods, for example using images to gain insight from the work we’ve recently announced on Urban Forests….

I should explain here that our data is not held in one big linked database; we’re architecting our Data Access Platform so that data can be linked in different ways for different purposes. This is designed to preserve data confidentiality, so only the necessary subset of data is accessible by authorised people, for a certain purpose. To avoid compromising their effectiveness, we do not make public the specific details of the security measures we have in place, but our recently tightened security regime, which is independently assured by trusted external bodies, includes:

  • physical measures to restrict who can access places where data is stored;
  • protective measures for all data-related IT services;
  • measures to restrict who can access systems and data held by ONS;
  • controls to guard against staff or contractors misusing their legitimate access to data; including vetting to an appropriate level for the sensitivity of data to which they might have access.

One of the things I love about working in the public sector is that our work can be shared openly.

We live in a rapidly changing and developing digital world and we will continue to monitor and assess the data standards and security measures in place to ensure they remain strong and effective. So, as well as sharing this work openly to reassure all our data suppliers that we’re taking good care of their data, we’re also seeking feedback on our revised data policies.

The same data can provide different insights when viewed through different lenses or in different combinations. The more data is shared – with the appropriate safeguards of course – the more it has to give.

If you work with data, you’ll know that collaborating with others in this space is key and that we need to be able to share data more easily when it makes sense to do so. So, the second reason for sharing this work openly is that, if you’re in the technical space, we’d value your feedback on our approach and if you’re in the data space and would like to adopt the same approach, we’d love to support you with that – so that we can all share data more easily in the future….(More)

ONS’s revised policies on the use, management and security of data can befound here.