Intelligent sharing: unleashing the potential of health and care data in the UK to transform outcomes

Curated on Posted on by Stefaan Verhulst

Report by Future Care Capital: “….Data is often referred to as the ‘new oil’ – the 21st century raw material which, when hitched to algorithmic refinement, may be mined for insight and value – and ‘data flows’ are said to have exerted a greater impact upon global growth than traditional goods flows in recent years (Manyika et al, 2016). Small wonder, then, that governments around the world are endeavouring to strike a balance between individual privacy rights and protections on the one hand, and organisational permissions to facilitate the creation of social, economic and environmental value from broad-ranging data on the other: ‘data rights’ are now of critical importance courtesy of technological advancements. The tension between the two is particularly evident where health and care data in the UK is concerned. Individuals are broadly content with anonymised data from their medical records being used for public benefit but are, understandably, anxious about the implications of the most intimate aspects of their lives being hacked or, else, shared without their knowledge or consent….

The potential for health and care data to be transformative remains, and there is growing concern that opportunities to improve the use of health and care data in peoples’ interests are being missed….

we recommend additional support for digitisation efforts in social care settings. We call upon the Government to streamline processes associated with Information Governance (IG) modelling to help data sharing initiatives that traverse organisational boundaries. We also advocate for investment and additional legal safeguards to make more anonymised data sets available for research and innovation. Crucially, we recommend expediting the scope for individuals to contribute health and care data to sharing initiatives led by the public sector through promotion, education and pilot activities – so that data is deployed to transform public health and support the ‘pivot to prevention’.

In Chapter Two, we explore the rationale and scope for the UK to build upon emergent practice from around the world and become a global leader in ‘data philanthropy’ – to push at the boundaries of existing plans and programmes, and support the development of and access to unrivalled health and care data sets. We look at member-controlled ‘data cooperatives’ and what we’ve termed ‘data communities’ operated by trusted intermediaries. We also explore ‘data collaboratives’ which involve the private sector engaging in data philanthropy for public benefit. Here, we make recommendations about promoting a culture of data philanthropy through the demonstration of tangible benefits to participants and the wider public, and we call upon Government to assess the appetite and feasibility of establishing the world’s first National Health and Care Data Donor Bank….(More)”

 

Lessons from Airbnb and Uber to Open Government as a Platform

Curated on Posted on by Stefaan Verhulst

Interview by Marquis Cabrera with Sangeet Paul Choudary: “…Platform companies have a very strong core built around data, machine learning, and a central infrastructure. But they rapidly innovate around it to try and test new things in the market and that helps them open themselves for further innovation in the ecosystem. Governments can learn to become more modular and more agile, the way platform companies are. Modularity in architecture is a very fundamental part of being a platform company; both in terms of your organizational architecture, as well as your business model architecture.

The second thing that governments can learn from a platform company is that successful platform companies are created with intent. They are not created by just opening out what you have available. If you look at the current approach of applying platform thinking in government, a common approach is just to take data and open it out to the world. However, successful platform companies first create a shaping strategy to shape-out and craft a direction of vision for the ecosystem in terms of what they can achieve by being on the platform. They then provision the right tools and services that serve the vision to enable success for the ecosystem[1] . And only then do they open up their infrastructure. It’s really important that you craft the right shaping strategy and use that to define the rights tools and services before you start pursuing a platform implementation.

In my work with governments, I regularly find myself stressing the importance of thinking as a market maker rather than as a service provider. Governments have always been market makers but when it comes to technology, they often take the service provider approach.

In your book, you used San Francisco City Government and Data.gov as examples of infusing platform thinking in government. But what are some global examples of governments, countries infusing platform thinking around the world?

One of the best examples is from my home country Singapore, which has been at the forefront of converting the nation into a platform. It has now been pursuing platform strategy both overall as a nation by building a smart nation platform, and also within verticals. If you look particularly at mobility and transportation, it has worked to create a central core platform and then build greater autonomy around how mobility and transportation works in the country. Other good examples of governments applying this are Dubai, South Korea, Barcelona; they are all countries and cities that have applied the concept of platforms very well to create a smart nation platform. India is another example that is applying platform thinking with the creation of the India stack, though the implementation could benefit from better platform governance structures and a more open regulation around participation….(More)”.

Madrid as a democracy lab

Curated on Posted on by Stefaan Verhulst

Bernardo Gutiérrez at OpenDemocracy: “…The launch of Decide Madrid, the city participation platform running on the Consul free software, signaled a real revolution. On the one hand, it paved the way for democracy from the bottom up, through direct and binding mechanisms. Unlike other historical participatory budgets, the 100 million Euros devoted to Decide Madrid participatory budgets in 2017 are allocated according to proposals coming from below. The proposals that get the most votes, whenever technically feasible, are approved. The platform also carries a section for “citizen proposals”. …

The Decide Madrid platform was not initially well received by the traditional neighbourhood associations, used to face-to-face participation and to mediating between citizens and government. In order to tackle this, a number of face-to-face deliberation spaces are being set up, such as the Local Forums (physical participation spaces in the districts), and also projects such as If you feel like a cat (participation for children and teenagers), or processes such as G1000, which aims at promoting collective deliberation and fostering proposals from below on the basis of a representative sample of the population, so that the participants’ diversity and plurality is guaranteed.

Most projects are being carried out with the support of the new Laboratories of Citizen Innovation of the prestigious Medialab-Prado. The Participa LAB(Collective Intelligence for Democracy), the DataLab (open data) and the InciLab (Citizen Innovation Lab) are joint public/common initiatives, acting as a bridge between local government and citizens. The Participa LAB, which is the one working more closely on participation, is collaborating with Decide Madridin a number of projects (Codat Madrid hackathons, If you feel like a cat, community lines, gamification, G1000, narrative groups…) and coordinates the Collective Intelligence for Democracy international call. InciLab has launched, among many other initiatives, the Madrid Listens project, to connect City Hall officials with citizens on concrete projects, blending disintermediation and the citizen lab philosophy.

More than 300.000 users strong, Decide Madrid is consolidating itself as the hegemonic space for participation in the city. It activates a variety of processes, debates, proposals, and projects. Its free software means that any city can adapt Consul to its needs, without any substantial investment, and set up a platform. From Barcelona to A Coruña, from Rome to Paris and Buenos Aires, dozens of institutions around the world have replicated the initial Decide Madrid core, thus setting up what Audrey Tang, Taiwan’s digital minister, calls a “liquid federation of cities”. Ada Colau, the mayor of Barcelona, praising the cooperative network of participation cities says: “It is very interesting that in Barcelona we have been able to carry out our first experience of digital participation, Decidim Barcelona, adapting Madrid’s base code. Once we have had a first proposal, we have shared it with many municipalities throughout Catalonia”.

Distributed democracy

The brain as a metaphor. A map of Hamburg (Germany) as a symbol of the networked, decentralized city. Neurons and neighbourhoods connected by flows, inevitably synchronized. Both images are to be found in Emergency, Steven Johnson’s classic book on collective intelligence processes. The city as a brain, as a whole made of decentralized nodes. The city as an open network, where any neighbourhood-node can connect with any other. Caio Vassão’s concept of a distributed city rounds the edges of the city with no centre, “networked, open, fluid, flexible, adaptable, reconfigurable”. A city where the neighbourhoods in the suburbs dialogue and relate to each other without the mediation of a historical center.

Left: Diagram of the human brain. Image source: Mittermeier. Right: Map of Hamburg, circa 1850. Image source: Princeton Architectural Press.

Madrid has kick-started a forceful decentralization policy. Distributed democracy in Madrid can be seen in how budgets are allocated, how city districts have multiplied their resources and partly manage cultural festivals (like the Summers in the City) and cultural projects (Madrid District).

At the same time, the launching of the Local Forums is a clear move to decentralize power and participation in the city. Through projects such as Experiment District (travelling citizen laboratories), Imagine Madrid (rethinking 10 territories) or the M.A.R.E.S project, Spain’s capital city is redrawing its neighbourhood fabric, its economic relations, and citizen involvement in decision making. The successful Medialab-Prado’s Experiment District project, which has already visited Villaverde, Moratalaz and Fuencarral, is in full expansion. It is about to even launch a global call, as dozens of cities around the world want to replicate it. Medialab-Prado, one of the city innovation centres, defines Experiment District as a set of “citizen labs for experimenting and collaborative learning in which anyone can participate”. Citizen (neighbourhood) labs based on the prototyping culture, an open and collaborative way of developing projects. Citizen (neighbourhood) labs for learning and teaching, where the result is not a perfect product, but a process that can be improved in real time through the collaboration of citizens from the Madrid neighbourhoods….(More)”

Data and the City

Curated on Posted on by Stefaan Verhulst

Book edited by Rob Kitchin, Tracey P. Lauriault, and Gavin McArdle: “There is a long history of governments, businesses, science and citizens producing and utilizing data in order to monitor, regulate, profit from and make sense of the urban world. Recently, we have entered the age of big data, and now many aspects of everyday urban life are being captured as data and city management is mediated through data-driven technologies.

Data and the City is the first edited collection to provide an interdisciplinary analysis of how this new era of urban big data is reshaping how we come to know and govern cities, and the implications of such a transformation. This book looks at the creation of real-time cities and data-driven urbanism and considers the relationships at play. By taking a philosophical, political, practical and technical approach to urban data, the authors analyse the ways in which data is produced and framed within socio-technical systems. They then examine the constellation of existing and emerging urban data technologies. The volume concludes by considering the social and political ramifications of data-driven urbanism, questioning whom it serves and for what ends.

This book, the companion volume to 2016’s Code and the City, offers the first critical reflection on the relationship between data, data practices and the city, and how we come to know and understand cities through data. It will be crucial reading for those who wish to understand and conceptualize urban big data, data-driven urbanism and the development of smart cities….(More)”

The Politics of Listening: Possibilities and Challenges for Democratic Life

Curated on Posted on by Stefaan Verhulst

Book by Leah Bassel: “…explores listening as a social and political practice, in contrast to the more common focus on voice and speaking.  The author draws on cases from Canada, France and the United Kingdom, exploring: minority women and debates over culture and religion; riots and young men in France and England; citizen journalism and the creative use of different media; and solidarity between migrant justice and indigenous activists. Analysis across these diverse settings considers whether and how a politics of listening, which demands that the roles of speakers and listeners change, can be undertaken in adversarial and tense political moments. The Politics of Listening argues that such a practice has the potential to create new ways of being and acting together, as political equals who are heard on their own terms….(More)”

The Right of Access to Public Information

Curated on Posted on by Stefaan Verhulst

Book by Hermann-Josef Blanke and Ricardo Perlingeiro: “This book presents a comparative study on access to public information in the context of the main legal orders worldwide. The international team of authors analyzes the Transparency- and Freedom-to-Information legislation with regard to the scope of the right to access, limitations of this right inherent in the respective national laws, the procedure, the relationship with domestic legislation on administrative procedure, as well as judicial protection. It particularly focuses on the Brazilian law of access to information, which is interpreted as a benchmark for regulations in other Latin-American states….(More)”

Big Data: A Twenty-First Century Arms Race

Curated on Posted on by Stefaan Verhulst

Report by Atlantic Council and Thomson Reuters: “We are living in a world awash in data. Accelerated interconnectivity, driven by the proliferation of internet-connected devices, has led to an explosion of data—big data. A race is now underway to develop new technologies and implement innovative methods that can handle the volume, variety, velocity, and veracity of big data and apply it smartly to provide decisive advantage and help solve major challenges facing companies and governments

For policy makers in government, big data and associated technologies like machine-learning and artificial Intelligence, have the potential to drastically improve their decision-making capabilities. How governments use big data may be a key factor in improved economic performance and national security. This publication looks at how big data can maximize the efficiency and effectiveness of government and business, while minimizing modern risks. Five authors explore big data across three cross-cutting issues: security, finance, and law.

Chapter 1, “The Conflict Between Protecting Privacy and Securing Nations,” Els de Busser
Chapter 2, “Big Data: Exposing the Risks from Within,” Erica Briscoe
Chapter 3, “Big Data: The Latest Tool in Fighting Crime,” Benjamin Dean, Fellow
Chapter 4, “Big Data: Tackling Illicit Financial Flows,” Tatiana Tropina
Chapter 5, “Big Data: Mitigating Financial Crime Risk,” Miren Aparicio….Read the Publication (PDF)“

Powerlessness and the Politics of Blame

Curated on Posted on by Stefaan Verhulst

The Jefferson Lecture in the Humanities by Martha C. Nussbaum: “… I believe the Greeks and Romans are right: anger is a poison to democratic politics, and it is all the worse when fueled by a lurking fear and a sense of helplessness. As a philosopher I have been working on these ideas for some time, first in a 2016 book called Anger and Forgiveness, and now in a book in progress called The Monarchy of Fear, investigating the relationship between anger and fear. In my work, I draw not only on the Greeks and Romans, but also on some recent figures, as I shall tonight. I conclude that we should resist anger in ourselves and inhibit its role in our political culture.

That idea, however, is radical and evokes strong opposition. For anger, with all its ugliness, is a popular emotion. Many people think that it is impossible to care for justice without anger at injustice, and that anger should be encouraged as part of a transformative process. Many also believe that it is impossible for individuals to stand up for their own self-respect without anger, that someone who reacts to wrongs and insults without anger is spineless and downtrodden. Nor are these ideas confined to the sphere of personal relations. The most popular position in the sphere of criminal justice today is retributivism, the view that the law ought to punish aggressors in a manner that embodies the spirit of justified anger. And it is also very widely believed that successful challenges against great injustice need anger to make progress.

Still, we may persist in our Aeschylean skepticism, remembering that recent years have seen three noble and successful freedom movements conducted in a spirit of non-anger: those of Mohandas Gandhi, Martin Luther King, Jr., and Nelson Mandela—surely people who stood up for their self-respect and that of others, and who did not acquiesce in injustice.

I’ll now argue that a philosophical analysis of anger can help us support these philosophies of non-anger, showing why anger is fatally flawed from a normative viewpoint—sometimes incoherent, sometimes based on bad values, and especially poisonous when people use it to deflect attention from real problems that they feel powerless to solve.  Anger pollutes democratic politics and is of dubious value in both life and the law. I’ll present my general view, and then show its relevance to thinking well about the struggle for political justice, taking our own ongoing struggle for racial justice as my example. And I’ll end by showing why these arguments make it urgent for us to learn from literature and philosophy, keeping the humanities strong in our society….(More)”

Big Mind: How Collective Intelligence Can Change Our World

Curated on Posted on by Stefaan Verhulst

Book by Geoff Mulgan: “A new field of collective intelligence has emerged in the last few years, prompted by a wave of digital technologies that make it possible for organizations and societies to think at large scale. This “bigger mind”—human and machine capabilities working together—has the potential to solve the great challenges of our time. So why do smart technologies not automatically lead to smart results? Gathering insights from diverse fields, including philosophy, computer science, and biology, Big Mind reveals how collective intelligence can guide corporations, governments, universities, and societies to make the most of human brains and digital technologies.

Geoff Mulgan explores how collective intelligence has to be consciously organized and orchestrated in order to harness its powers. He looks at recent experiments mobilizing millions of people to solve problems, and at groundbreaking technology like Google Maps and Dove satellites. He also considers why organizations full of smart people and machines can make foolish mistakes—from investment banks losing billions to intelligence agencies misjudging geopolitical events—and shows how to avoid them.

Highlighting differences between environments that stimulate intelligence and those that blunt it, Mulgan shows how human and machine intelligence could solve challenges in business, climate change, democracy, and public health. But for that to happen we’ll need radically new professions, institutions, and ways of thinking.

Informed by the latest work on data, web platforms, and artificial intelligence, Big Mind shows how collective intelligence could help us survive and thrive….(More)”

Everybody Lies: Big Data, New Data, and What the Internet Can Tell Us About Who We Really Are

Curated on Posted on by Stefaan Verhulst

Book by Seth Stephens-Davidowitz: “Blending the informed analysis of The Signal and the Noise with the instructive iconoclasm of Think Like a Freak, a fascinating, illuminating, and witty look at what the vast amounts of information now instantly available to us reveals about ourselves and our world—provided we ask the right questions.

By the end of an average day in the early twenty-first century, human beings searching the internet will amass eight trillion gigabytes of data. This staggering amount of information—unprecedented in history—can tell us a great deal about who we are—the fears, desires, and behaviors that drive us, and the conscious and unconscious decisions we make. From the profound to the mundane, we can gain astonishing knowledge about the human psyche that less than twenty years ago, seemed unfathomable.

Everybody Lies offers fascinating, surprising, and sometimes laugh-out-loud insights into everything from economics to ethics to sports to race to sex, gender and more, all drawn from the world of big data. What percentage of white voters didn’t vote for Barack Obama because he’s black? Does where you go to school effect how successful you are in life? Do parents secretly favor boy children over girls? Do violent films affect the crime rate? Can you beat the stock market? How regularly do we lie about our sex lives and who’s more self-conscious about sex, men or women?

Investigating these questions and a host of others, Seth Stephens-Davidowitz offers revelations that can help us understand ourselves and our lives better. Drawing on studies and experiments on how we really live and think, he demonstrates in fascinating and often funny ways the extent to which all the world is indeed a lab. With conclusions ranging from strange-but-true to thought-provoking to disturbing, he explores the power of this digital truth serum and its deeper potential—revealing biases deeply embedded within us, information we can use to change our culture, and the questions we’re afraid to ask that might be essential to our health—both emotional and physical. All of us are touched by big data everyday, and its influence is multiplying. Everybody Lies challenges us to think differently about how we see it and the world…(More)”.