The big questions for research using personal data


 at Royal Society’s “Verba”: “We live in an era of data. The world is generating 1.7 million billion bytes of data every minute and the total amount of global data is expected to grow 40% year on year for the next decade (PDF). In 2003 scientists declared the mapping of the human genome complete. It took over 10 years and cost $1billion – today it takes mere days and can be done at a fraction of the cost.

Making the most of the data revolution will be key to future scientific and economic progress. Unlocking the value of data by improving the way that we collect, analyse and use data has the potential to improve lives across a multitude of areas, ranging from business to health, and from tackling climate change to aiding civic engagement. However, its potential for public benefit must be balanced against the need for data to be used intelligently and with respect for individuals’ privacy.

Getting regulation right

The UK Data Protection Act was transposed into UK law following the 1995 European Data Protection Directive. This was at a time before wide-spread use of internet and smartphones. In 2012, recognising the pace of technological change, the European Commission proposed a comprehensive reform of EU data protection rules including a new Data Protection Regulation that would update and harmonise these rules across the EU.

The draft regulation is currently going through the EU legislative process. During this, the European Parliament has proposed changes to the Commission’s text. These changes have raised concerns for researchers across Europe that the Regulation could risk restricting the use of personal data for research which could prevent much vital health research. For example, researchers currently use these data to better understand how to prevent and treat conditions such as cancer, diabetes and dementia. The final details of the regulation are now being negotiated and the research community has come together to highlight the importance of data in research and articulate their concerns in a joint statement, which the Society supports.

The Society considers that datasets should be managed according to a system of proportionate governance. Personal data should only be shared if it is necessary for research with the potential for high public value and should be proportionate to the particular needs of a research project. It should also draw on consent, authorisation and safe havens – secure sites for databases containing sensitive personal data that can only be accessed by authorised researchers – as appropriate…..

However, many challenges remain that are unlikely to be resolved in the current European negotiations. The new legislation covers personal data but not anonymised data, which are data that have had information that can identify persons removed or replaced with a code. The assumption is that anonymisation is a foolproof way to protect personal identity. However, there have been examples of reidentification from anonymised data and computer scientists have long pointed out the flaws of relying on anonymisation to protect an individual’s privacy….There is also a risk of leaving the public behind with lack of information and failed efforts to earn trust; and it is clear that a better understanding of the role of consent and ethical governance is needed to ensure the continuation of cutting edge research which respects the principles of privacy.

These are problems that will require attention, and questions that the Society will continue to explore. …(More)”

Testing governance: the laboratory lives and methods of policy innovation labs


Ben Williamson at Code Acts in Education: “Digital technologies are increasingly playing a significant role in techniques of governance in sectors such as education as well as healthcare, urban management, and in government innovation and citizen engagement in government services. But these technologies need to be sponsored and advocated by particular individuals and groups before they are embedded in these settings.

Testing governance cover

I have produced a working paper entitled Testing governance: the laboratory lives and methods of policy innovation labs which examines the role of innovation labs as sponsors of new digital technologies of governance. By combining resources and practices from politics, data analysis, media, design, and digital innovation, labs act as experimental R&D labs and practical ideas organizations for solving social and public problems, located in the borderlands between sectors, fields and disciplinary methodologies. Labs are making methods such as data analytics, design thinking and experimentation into a powerful set of governing resources.They are, in other words, making digital methods into key techniques for understanding social and public issues, and in the creation and circulation of solutions to the problems of contemporary governance–in education and elsewhere.

The working paper analyses the key methods and messages of the labs field, in particular by investigating the documentary history of Futurelab, a prototypical lab for education research and innovation that operated in Bristol, UK, between 2002 and 2010, and tracing methodological continuities through the current wave of lab development. Centrally, the working paper explores Futurelab’s contribution to the production and stabilization of a ‘sociotechnical imaginary’ of the future of education specifically, and to the future of public services more generally. It offers some preliminary analysis of how such an imaginary was embedded in the ‘laboratory life’ of Futurelab, established through its organizational networks, and operationalized in its digital methods of research and development as well as its modes of communication….(More)”

Applying Design Approaches to Policy Making: Discovering Policy Lab


Lucy Kimbell: “During 2014-2015 I spent three days a week embedded as an academic researcher in Policy Lab, a team in the Cabinet Office working closely with government departments and with the UK Civil Service’s policy profession. This was enabled by a fellowship from the Arts and Humanities Research Council while I was principal research fellow at the University of Brighton, building on other work including Mapping Social Design Research and Practice. Policy Lab is one example of an innovation team inside government, a growing network and set of practices.

The report summarises findings from the research informed by literature in design studies and organisation studies. It uses a format inspired by graphic novels in order to open up the work of interpretation about the role of design approaches in policy making and government….(More)” Click to download report (6MB, PDF)

Can non-Western democracy help to foster political transformation?


Richard Youngs at Open Democracy: “…many non-Western countries are showing signs of a newly-vibrant civic politics, organized in ways that are not centered on NGOs but on more loosely structured social movements in participatory forms of democracy where active citizenship is crucial—not just structured or formal, representative democratic institutions. Bolivia is a good example.

Many Western governments were skeptical about President Evo Morales’ political project, fearing that he would prove to be just as authoritarian as Hugo Chavez in Venezuela. But some Western donors (including Germany and the European Union) have already increased their support to indigenous social movements in Bolivia because they’ve become a vital channel of influence and accountability between government and society.

Secondly, it’s clear that the political dimensions of democracy will be undermined if economic conditions and inequalities are getting worse, so democracy promotion efforts need to be delinked from pressures to adopt neo-liberal economic policies. Western interests need to do more to prove that they are not supporting democracy primarily as a means to further their economic interest in ‘free markets.’ That’s why the European Union is supporting a growing number of projects designed to build up social insurance schemes during the early phases of democratic transitions. European diplomats, at least, say that they see themselves as supporters of social and economic democracy.

Donors are becoming more willing to support the role of labor unions in pro-democracy coalition-building; and to protect labor standards as a crucial part of political transitions in countries as diverse as Tunisia, Georgia, China, Egypt and Ecuador. But they should do more to assess how the embedded structures of economic power can undermine the quality of democratic processes. Support for civil society organizations that are keen on exploring heterodox economic models should also be stepped up.

Thirdly, non-Western structures and traditions can help to reduce violent conflict successfully. Tribal chiefs, traditional decision-making circles and customary dispute resolution mechanisms are commonplace in Africa and Asia, and have much to teach their counterparts in the West. In Afghanistan, for example, international organizations realized that the standard institutions of Western liberal democracy were gaining little traction, and were probably deepening rather than healing pre-existing divisions, so they’ve started to support local-level deliberative forums instead.

Something similar is happening in the Balkans, where the United States and the European Union are giving priority to locally tailored, consensual power-sharing arrangements. The United Nations is working with customary justice systems in Somalia. And in South Sudan and Kenya, donors have worked with tribal chiefs and supported traditional authorities to promote a better understanding of human rights and gender justice issues. These forms of power-sharing and ‘consensual communitarianism’ can be quite effective in protecting minorities while also encouraging dialogue and deliberation.

As these brief examples show, different countries can both offer and receive ideas about democratic transformation regardless of geography, though this is never straightforward. It involves finding a balance between defending genuinely-universal norms on the one hand, and encouraging democratic experimentation on the other. This is a thin line to walk, and it requires, for example, recognition that the basic precepts of liberal democracy are not synonymous with what can be seen as an amoral individualism, particularly in highly religious communities.

Pro-democracy reformers and civic groups in non-Western countries often take international organizations to task for pushing too hard on questions of ‘Western liberal rights’ rather than supporting variations to the standard, individualist template, even where tribal structures and traditional conflict-resolution mechanisms work reasonably well. This has led to resistance against international support in places as diverse as Libya, Mali and Pakistan…..

Academic critical theorists argue that Western democracy promoters fail to take alternative models of democracy on board because they would endanger their own geostrategic and economic interests….(More)”

Web design plays a role in how much we reveal online


European Commission: “A JRC study, “Nudges to Privacy Behaviour: Exploring an Alternative Approach to Privacy Notices“, used behavioural sciences to look at how individuals react to different types of privacy notices. Specifically, the authors analysed users’ reactions to modified choice architecture (i.e. the environment in which decisions take place) of web interfaces.

Two types of privacy behaviour were measured: passive disclosure, when people unwittingly disclose personal information, and direct disclosure, when people make an active choice to reveal personal information. After testing different designs with over 3 000 users from the UK, Italy, Germany and Poland, results show web interface affects decisions on disclosing personal information. The study also explored differences related to country of origin, gender, education level and age.

A depiction of a person’s face on the website led people to reveal more personal information. Also, this design choice and the visualisation of the user’s IP or browsing history had an impact on people’s awareness of a privacy notice. If confirmed, these features are particularly relevant for habitual and instinctive online behaviour.

With regard to education, users who had attended (though not necessarily graduated from) college felt significantly less observed or monitored and more comfortable answering questions than those who never went to college. This result challenges the assumption that the better educated are more aware of information tracking practices. Further investigation, perhaps of a qualitative nature, could help dig deeper into this issue. On the other hand, people with a lower level of education were more likely to reveal personal information unwittingly. This behaviour appeared to be due to the fact that non-college attendees were simply less aware that some online behaviour revealed personal information about themselves.

Strong differences between countries were noticed, indicating a relation between cultures and information disclosure. Even though participants in Italy revealed the most personal information in passive disclosure, in direct disclosure they revealed less than in other countries. Approximately 75% of participants in Italy chose to answer positively to at least one stigmatised question, compared to 81% in Poland, 83% in Germany and 92% in the UK.

Approximately 73% of women answered ‘never’ to the questions asking whether they had ever engaged in socially stigmatised behaviour, compared to 27% of males. This large difference could be due to the nature of the questions (e.g. about alcohol consumption, which might be more acceptable for males). It could also suggest women feel under greater social scrutiny or are simply more cautious when disclosing personal information.

These results could offer valuable insights to inform European policy decisions, despite the fact that the study has targeted a sample of users in four countries in an experimental setting. Major web service providers are likely to have extensive amounts of data on how slight changes to their services’ privacy controls affect users’ privacy behaviour. The authors of the study suggest that collaboration between web providers and policy-makers can lead to recommendations for web interface design that allow for conscientious disclosure of privacy information….(More)”

Nudge 2.0


Philipp Hacker: “This essay is both a review of the excellent book “Nudge and the Law. A European Perspective”, edited by Alberto Alemanno and Anne-Lise Sibony, and an assessment of the major themes and challenges that the behavioural analysis of law will and should face in the immediate future.

The book makes important and novel contributions in a range of topics, both on a theoretical and a substantial level. Regarding theoretical issues, four themes stand out: First, it highlights the differences between the EU and the US nudging environments. Second, it questions the reliance on expertise in rulemaking. Third, it unveils behavioural trade-offs that have too long gone unnoticed in behavioural law and economics. And fourth, it discusses the requirement of the transparency of nudges and the related concept of autonomy. Furthermore, the different authors discuss the impact of behavioural regulation on a number of substantial fields of law: health and lifestyle regulation, privacy law, and the disclosure paradigm in private law.

This paper aims to take some of the book’s insights one step further in order to point at crucial challenges – and opportunities – for the future of the behavioural analysis of law. In the last years, the movement has gained tremendously in breadth and depth. It is now time to make it scientifically even more rigorous, e.g. by openly embracing empirical uncertainty and by moving beyond the neo-classical/behavioural dichotomy. Simultaneously, the field ought to discursively readjust its normative compass. Finally and perhaps most strikingly, however, the power of big data holds the promise of taking behavioural interventions to an entirely new level. If these challenges can be overcome, this paper argues, the intersection between law and behavioural sciences will remain one of the most fruitful approaches to legal analysis in Europe and beyond….(More)”

Uber wants you to change the world without leaving home


Ludovic Hunter-Tilney at the Financial Times: “Another day, another petition. The latest pinging into my email is from Uber, the minicab app…..To their supporters, online petitions are like Uber itself, harnessing the disruptive power of technology to shake up public life. In 2011, the campaign group 38 Degrees (motto: “People, Power, Change”) helped derail UK government plans to sell off national forests with a petition of over 500,000 names. In 2013, a 36,000-strong call to get portraits of women on to British banknotes resulted in Jane Austen’s ascendancy to a forthcoming £10 note.

But e-petitions have become victims of their own success. The numbers they generate are so large that they have created a kind of arms race of popularity…..Despite their high-tech trappings, e-petitions are an essentially feudal mechanism for raising popular grievances. They are an act of supplication, an entreaty made to a higher authority. In a modern democracy, the true megaphone for expressing the popular will is the vote. Yet the way votes are cast in the UK is locked in a bizarre time warp.

Although we spend increasing amounts of our lives online, the idea of emailing or texting our votes is mired in specious fears of electoral fraud. Meanwhile, one-third of eligible voters do not take part in general elections and almost two-thirds ignore local elections….(More)”

 

 

What we can learn from the failure of Google Flu Trends


David Lazer and Ryan Kennedy at Wired: “….The issue of using big data for the common good is far more general than Google—which deserves credit, after all, for offering the occasional peek at their data. These records exist because of a compact between individual consumers and the corporation. The legalese of that compact is typically obscure (how many people carefully read terms and conditions?), but the essential bargain is that the individual gets some service, and the corporation gets some data.

What is left out that bargain is the public interest. Corporations and consumers are part of a broader society, and many of these big data archives offer insights that could benefit us all. As Eric Schmidt, CEO of Google, has said, “We must remember that technology remains a tool of humanity.” How can we, and corporate giants, then use these big data archives as a tool to serve humanity?

Google’s sequel to GFT, done right, could serve as a model for collaboration around big data for the public good. Google is making flu-related search data available to the CDC as well as select research groups. A key question going forward will be whether Google works with these groups to improve the methodology underlying GFT. Future versions should, for example, continually update the fit of the data to flu prevalence—otherwise, the value of the data stream will rapidly decay.

This is just an example, however, of the general challenge of how to build models of collaboration amongst industry, government, academics, and general do-gooders to use big data archives to produce insights for the public good. This came to the fore with the struggle (and delay) for finding a way to appropriately share mobile phone data in west Africa during the Ebola epidemic (mobile phone data are likely the best tool for understanding human—and thus Ebola—movement). Companies need to develop efforts to share data for the public good in a fashion that respects individual privacy.

There is not going to be a single solution to this issue, but for starters, we are pushing for a “big data” repository in Boston to allow holders of sensitive big data to share those collections with researchers while keeping them totally secure. The UN has its Global Pulse initiative, setting up collaborative data repositories around the world. Flowminder, based in Sweden, is a nonprofit dedicated to gathering mobile phone data that could help in response to disasters. But these are still small, incipient, and fragile efforts.

The question going forward now is how build on and strengthen these efforts, while still guarding the privacy of individuals and the proprietary interests of the holders of big data….(More)”

Datafication and empowerment: How the open data movement re-articulates notions of democracy, participation, and journalism


Stefan Baack at Big Data and Society: “This article shows how activists in the open data movement re-articulate notions of democracy, participation, and journalism by applying practices and values from open source culture to the creation and use of data. Focusing on the Open Knowledge Foundation Germany and drawing from a combination of interviews and content analysis, it argues that this process leads activists to develop new rationalities around datafication that can support the agency of datafied publics. Three modulations of open source are identified: First, by regarding data as a prerequisite for generating knowledge, activists transform the sharing of source code to include the sharing of raw data. Sharing raw data should break the interpretative monopoly of governments and would allow people to make their own interpretation of data about public issues. Second, activists connect this idea to an open and flexible form of representative democracy by applying the open source model of participation to political participation. Third, activists acknowledge that intermediaries are necessary to make raw data accessible to the public. This leads them to an interest in transforming journalism to become an intermediary in this sense. At the same time, they try to act as intermediaries themselves and develop civic technologies to put their ideas into practice. The article concludes with suggesting that the practices and ideas of open data activists are relevant because they illustrate the connection between datafication and open source culture and help to understand how datafication might support the agency of publics and actors outside big government and big business….(More)”

Harnessing the Data Revolution for Sustainable Development


US State Department Fact Sheet on “U.S. Government Commitments and Collaboration with the Global Partnership for Sustainable Development Data”: “On September 27, 2015, the member states of the United Nations agreed to a set of Sustainable Development Goals (Global Goals) that define a common agenda to achieve inclusive growth, end poverty, and protect the environment by 2030. The Global Goals build on tremendous development gains made over the past decade, particularly in low- and middle-income countries, and set actionable steps with measureable indicators to drive progress. The availability and use of high quality data is essential to measuring and achieving the Global Goals. By harnessing the power of technology, mobilizing new and open data sources, and partnering across sectors, we will achieve these goals faster and make their progress more transparent.

Harnessing the data revolution is a critical enabler of the global goals—not only to monitor progress, but also to inclusively engage stakeholders at all levels – local, regional, national, global—to advance evidence-based policies and programs to reach those who need it most. Data can show us where girls are at greatest risk of violence so we can better prevent it; where forests are being destroyed in real-time so we can protect them; and where HIV/AIDS is enduring so we can focus our efforts and finish the fight. Data can catalyze private investment; build modern and inclusive economies; and support transparent and effective investment of resources for social good…..

The Global Partnership for Sustainable Development Data (Global Data Partnership), launched on the sidelines of the 70th United Nations General Assembly, is mobilizing a range of data producers and users—including governments, companies, civil society, data scientists, and international organizations—to harness the data revolution to achieve and measure the Global Goals. Working together, signatories to the Global Data Partnership will address the barriers to accessing and using development data, delivering outcomes that no single stakeholder can achieve working alone….The United States, through the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), is joining a consortium of funders to seed this initiative. The U.S. Government has many initiatives that are harnessing the data revolution for impact domestically and internationally. Highlights of our international efforts are found below:

Health and Gender

Country Data Collaboratives for Local Impact – PEPFAR and the Millennium Challenge Corporation(MCC) are partnering to invest $21.8 million in Country Data Collaboratives for Local Impact in sub-Saharan Africa that will use data on HIV/AIDS, global health, gender equality, and economic growth to improve programs and policies. Initially, the Country Data Collaboratives will align with and support the objectives of DREAMS, a PEPFAR, Bill & Melinda Gates Foundation, and Girl Effect partnership to reduce new HIV infections among adolescent girls and young women in high-burden areas.

Measurement and Accountability for Results in Health (MA4Health) Collaborative – USAID is partnering with the World Health Organization, the World Bank, and over 20 other agencies, countries, and civil society organizations to establish the MA4Health Collaborative, a multi-stakeholder partnership focused on reducing fragmentation and better aligning support to country health-system performance and accountability. The Collaborative will provide a vehicle to strengthen country-led health information platforms and accountability systems by improving data and increasing capacity for better decision-making; facilitating greater technical collaboration and joint investments; and developing international standards and tools for better information and accountability. In September 2015, partners agreed to a set of common strategic and operational principles, including a strong focus on 3–4 pathfinder countries where all partners will initially come together to support country-led monitoring and accountability platforms. Global actions will focus on promoting open data, establishing common norms and standards, and monitoring progress on data and accountability for the Global Goals. A more detailed operational plan will be developed through the end of the year, and implementation will start on January 1, 2016.

Data2X: Closing the Gender GapData2X is a platform for partners to work together to identify innovative sources of data, including “big data,” that can provide an evidence base to guide development policy and investment on gender data. As part of its commitment to Data2X—an initiative of the United Nations Foundation, Hewlett Foundation, Clinton Foundation, and Bill & Melinda Gates Foundation—PEPFAR and the Millennium Challenge Corporation (MCC) are working with partners to sponsor an open data challenge to incentivize the use of gender data to improve gender policy and practice….(More)”

See also: Data matters: the Global Partnership for Sustainable Development Data. Speech by UK International Development Secretary Justine Greening at the launch of the Global Partnership for Sustainable Development Data.