Engaging citizens in determining the appropriate conditions and purposes for re-using Health Data

Curated on Posted on by Stefaan Verhulst

Beth Noveck at The GovLab: “…The term, big health data, refers to the ability to gather and analyze vast quantities of online information about health, wellness and lifestyle. It includes not only our medical records but data from apps that track what we buy, how often we exercise and how well we sleep, among many other things. It provides an ocean of information about how healthy or ill we are, and unsurprisingly, doctors, medical researchers, healthcare organizations, insurance companies and governments are keen to get access to it. Should they be allowed to?

It’s a huge question, and AARP is partnering with GovLab to learn what older Americans think about it. AARP is a non-profit organization — the largest in the nation and the world — dedicated to empowering Americans to choose how they live as they age. In 2018 it had more than 38 million members. It is a key voice in policymaking in the United States, because it represents the views of people aged over 50 in this country.

From today, AARP and the GovLab are using the Internet to capture what AARP members feel are the most urgent issues confronting them to try to discover what worries people most: the use of big health data or the failure to use it.

The answers are not simple. On the one hand, increasing the use and sharing of data could enable doctors to make better diagnoses and interventions to prevent disease and make us healthier. It could lead medical researchers to find cures faster, while the creation of health data businesses could strengthen the economy.

On the other hand, the collection, sharing, and use of big health data could reveal sensitive personal information over which we have little control. This data could be sold without our consent, and be used by entities for surveillance or discrimination, rather than to promote well-being….(More)”.

Sifting for Deeper Insights from Public Opinion: Towards Crowdsourcing and Big Data for Project Improvement

Curated on Posted on by Stefaan Verhulst

Paper by Jean Marie Tshimula et al: “Over the years, there seems to be a unidirectional top-down approach to decision-making in providing social services to the masses. This has often led to poor uninformed decisions being made with outcomes which do not necessarily match needs. Similarly from the grassroots level, it has been challenging to give opinions that reach the governing authorities (decision-making organs). The government consequently sets targets geared towards addressing societal concerns, but which do not often achieve desired results where such government endeavors are not in harmony with societal needs.

With public opinions being heard and given consideration, societal needs can be better known and priorities set to address these concerns. This paper therefore presents a priority-based voting model for governments to collect public opinion data that bring suggestions to boost their endeavors in the right direction using crowdsourcing and big data analytics….(More)”.

Dreamocracy – Collective Intelligence for the Common Good

Curated on Posted on by Stefaan Verhulst

About: “Dreamocracy is a think-and-do-tank that fosters collective intelligence / creativity for the common good through analysis, advice to organisations, and by developing and implementing innovative stakeholder management experiments.  

Dreamocracy aims to contribute to democracy’s reinvention and future. As Harvard scholar Yascha Mounk stresses, democracy in many parts of the world is at risk of “deconsolidation.” Possible collapse is signalled by the convergence of people’s dissatisfaction with democracy; their willingness to consider non-democratic forms of government as possible alternatives; and the rise in populist parties, anti-system movements and demagogues in government.

In order to ensure a bright future for democracy in service to society, Dreamocracy believes collective intelligence done well is essential to address the following three terms of our proposed “trust-in-government equation”:

TRUST = Process legitimacy + Output legitimacy + Emotions legitimacy….(More)”.

Platform policy and regulation: towards a radical democratic turn

Curated on Posted on by Stefaan Verhulst

Paper by Bart Cammaerts and Robin Mansell: “This article considers challenges to policy and regulation presented by the dominant digital platforms. A radical democratic framing of the deliberative process is developed to acknowledge the full complexity of power relations that are in play in policy and regulatory debates and this view is contrasted with a liberal democratic perspective.

We show how these different framings have informed historical and contemporary approaches to the challenges presented by conflicting interests in economic value and a range of public values in the context of media content, communication infrastructure and digital platform policy and regulation. We argue for an agonistic approach to digital platform policy and regulatory debate so as to encourage a denaturalization of the prevailing logics of commercial datafication. We offer some suggestions about how such a generative discourse might be encouraged in such a way that it starts to yield a new common sense about the further development of digital platforms; one that might favor a digital ecology better attuned to consumer and citizen interests in democratic societies….(More)”.

The most innovative political projects in Europe 2019

Curated on Posted on by Stefaan Verhulst

The Innovation in Politics Institute: “Since 2017, the Innovation in Politics Awards have been honouring successfully implemented political initiatives – regardless of party affiliation, political level or region. The aim is to strengthen, further develop and inspire democratic politics…

The winning projects by category are:

COOPERATIVE COUNCIL GRONINGEN: Trust is crucial in life – and in politics. The open citizens’ council in Groningen builds trust between citizens and politicians. When they sit shoulder to shoulder in the local council and decide together, a joint sense of responsibility quickly develops. The citizens are chosen at random in order to motivate a variety of people to participate. An evaluation by the University of Groningen showed increased trust on all sides, more active voting behaviour and a stronger community. …

SMART CITY BAD HERSFELD: The “Smart City Bad Hersfeld” project links public administration, citizens and businesses in the city to improve living and working conditions. With 30,000 inhabitants, it is the smallest city in Germany to have developed such a programme. A digital parking guidance system optimises the use of space and the finding of a parking space. Municipal charging stations for electric cars promote environmentally friendly transport. “Smartboxes” on main roads collect data on traffic noise and waste materials for effective environmental management. Free Internet in the city centre motivates everyone to use such services….(More)”

Collective Intelligence: A Taxonomy and Survey

Curated on Posted on by Stefaan Verhulst

Paper by Feijuan He et al: “Collective intelligence (CI) refers to the intelligence that emerges at the macro-level of a collection and transcends that of the individuals. CI is a continuously popular research topic that is studied by researchers in different areas, such as sociology, economics, biology, and artificial intelligence. In this survey, we summarize the works of CI in various fields. First, according to the existence of interactions between individuals and the feedback mechanism in the aggregation process, we establish CI taxonomy that includes three paradigms: isolation, collaboration and feedback. We then conduct statistical literature analysis to explain the differences among three paradigms and their development in recent years. Second, we elaborate the types of CI under each paradigm and discuss the generation mechanism or theoretical basis of the different types of CI. Third, we describe certain CI-related applications in 2019, which can be appropriately categorized by our proposed taxonomy. Finally, we summarize the future research directions of CI under each paradigm. We hope that this survey helps researchers understand the current conditions of CI and clears the directions of future research….(More)”

The Crowd and the Cosmos: Adventures in the Zooniverse

Curated on Posted on by Stefaan Verhulst

Book by Chris Lintott: “The world of science has been transformed. Where once astronomers sat at the controls of giant telescopes in remote locations, praying for clear skies, now they have no need to budge from their desks, as data arrives in their inbox. And what they receive is overwhelming; projects now being built provide more data in a few nights than in the whole of humanity’s history of observing the Universe. It’s not just astronomy either – dealing with this deluge of data is the major challenge for scientists at CERN, and for biologists who use automated cameras to spy on animals in their natural habitats. Artificial intelligence is one part of the solution – but will it spell the end of human involvement in scientific discovery?

No, argues Chris Lintott. We humans still have unique capabilities to bring to bear – our curiosity, our capacity for wonder, and, most importantly, our capacity for surprise. It seems that humans and computers working together do better than computers can on their own. But with so much scientific data, you need a lot of scientists – a crowd, in fact. Lintott found such a crowd in the Zooniverse, the web-based project that allows hundreds of thousands of enthusiastic volunteers to contribute to science.

In this book, Lintott describes the exciting discoveries that people all over the world have made, from galaxies to pulsars, exoplanets to moons, and from penguin behavior to old ship’s logs. This approach builds on a long history of so-called “citizen science,” given new power by fast internet and distributed data. Discovery is no longer the remit only of scientists in specialist labs or academics in ivory towers. It’s something we can all take part in. As Lintott shows, it’s a wonderful way to engage with science, yielding new insights daily. You, too, can help explore the Universe in your lunch hour…(More)”.

A New Wave of Deliberative Democracy

Curated on Posted on by Stefaan Verhulst

Essay by Claudia Chwalisz: “….Deliberative bodies such as citizens’ councils, assemblies, and juries are often called “deliberative mini-publics” in academic literature. They are just one aspect of deliberative democracy and involve randomly selected citizens spending a significant period of time developing informed recommendations for public authorities. Many scholars emphasize two core defining features: deliberation (careful and open discussion to weigh the evidence about an issue) and representativeness, achieved through sortition (random selection).

Of course, the principles of deliberation and sortition are not new. Rooted in ancient Athenian democracy, they were used throughout various points of history until around two to three centuries ago. Evoked by the Greek statesman Pericles in 431 BCE, the ideas—that “ordinary citizens, though occupied with the pursuits of industry, are still fair judges of public matters” and that instead of being a “stumbling block in the way of action . . . [discussion] is an indispensable preliminary to any wise action at all”—faded to the background when elections came to dominate the contemporary notion of democracy.

But the belief in the ability of ordinary citizens to deliberate and participate in public decisionmaking has come back into vogue over the past several decades. And it is modern applications of the principles of sortition and deliberation, meaning their adaption in the context of liberal representative democratic institutions, that make them “democratic innovations” today. This is not to say that there are no longer proponents who claim that governance should be the domain of “experts” who are committed to govern for the general good and have superior knowledge to do it. Originally espoused by Plato, the argument in favor of epistocracy—rule by experts—continues to be reiterated, such as in Jason Brennan’s 2016 book Against Democracy. It is a reminder that the battle of ideas for democracy’s future is nothing new and requires constant engagement.

Today’s political context—characterized by political polarization; mistrust in politicians, governments, and fellow citizens; voter apathy; increasing political protests; and a new context of misinformation and disinformation—has prompted politicians, policymakers, civil society organizations, and citizens to reflect on how collective public decisions are being made in the twenty-first century. In particular, political tensions have raised the need for new ways of achieving consensus and taking action on issues that require long-term solutions, such as climate change and technology use. Assembling ordinary citizens from all parts of society to deliberate on a complex political issue has thus become even more appealing.

Some discussions have returned to exploring democracy’s deliberative roots. An ongoing study by the Organization for Economic Co-operation and Development (OECD) is analyzing over 700 cases of deliberative mini-publics commissioned by public authorities to inform their decisionmaking. The forthcoming report assesses the mini-publics’ use, principles of good practice, and routes to institutionalization.3 This new area of work stems from the 2017 OECD Recommendation of the Council on Open Government, which recommends that adherents (OECD members and some nonmembers) grant all stakeholders, including citizens, “equal and fair opportunities to be informed and consulted and actively engage them in all phases of the policy-cycle” and “promote innovative ways to effectively engage with stakeholders to source ideas and co-create solutions.” A better understanding of how public authorities have been using deliberative mini-publics to inform their decisionmaking around the world, not just in OECD countries, should provide a richer understanding of what works and what does not. It should also reveal the design principles needed for mini-publics to effectively function, deliver strong recommendations, increase legitimacy of the decisionmaking process, and possibly even improve public trust….(More)”.

Fixing Democracy Demands the Building and Aligning of People’s Motivation and Authority to Act

Curated on Posted on by Stefaan Verhulst

Hahrie Han at SSIR: “Power operates in every domain of human life: in families and communities; in social, civic, and economic organizations; and in political states and regimes. Reclaiming democracy means contending with power.

Yet reformers are often reluctant to confront problems of power. Revealing underlying power dynamics can be complex and uncomfortable. It is often tempting to try to solve problems by instead looking for policy fixes, new technologies, and informational solutions.

In fact, some problems can be solved through policy, technology, and information. For instance, when doctors wanted to reduce the rate of Sudden Infant Death Syndrome (SIDS) in the early 1990s, they launched a campaign to teach parents to put babies to sleep on their backs instead of on their stomachs. Once parents had the knowledge that babies who sleep on their backs are less likely to suffocate, they made the necessary change and the SIDS rates dramatically declined. When scientists used technology to create the polio vaccine, they were able to basically eradicate polio. In these examples, there is an alignment, broadly speaking, between the motivation to act and the authority to act. Because parents have both the motivation to protect their children and the authority to determine how they sleep, when they had the information they needed, they adjusted their behaviors.

Problems of power, however, are different because there is usually a misalignment between motivation and authority. Either those who have the motivation to make change lack the authority or capacity to act, or those who have the authority lack the motivation. Solving problems of power, then, requires bringing motivation and authority into alignment.

Recasting challenges of democracy as problems of power makes visible a distinct set of solutions. Considered in this frame, the embrace of antidemocratic authoritarian ideologies around the world is not just a rejection of particular candidates, parties, or policies. Instead, it is a reflection of the profound mismatch between the motivations or interests of the public and the actions of those with authority to act. If people are left feeling powerless, they might believe they have no choice but to blow up the system.

But giving up on democracy is not the only solution. Reformers can also seek to strengthen the capacity of people to exercise their voices in the democratic process—and instantiate the authority they have to hold economic and political leaders accountable within institutions. Realizing democracy must be about building the motivation, capacity, and authority that people of all kinds need to act as a source of countervailing power to institutions of the economy and the state. That is realizing the promise of democracy….(More)”.

Civic Power: Rebuilding American Democracy in an Era of Crisis

Curated on Posted on by Stefaan Verhulst

Demos Press Release: “American democracy is in crisis. In their new book, Civic Power, political scientists K. Sabeel Rahman and Hollie Russon Gilman argue that the daily political turmoil of the Trump era actually masks a larger ailment. The current threat to U.S. democracy is rooted not just in the outcome of one election or the ascent of one leader, but in deeper systemic forms of inequality that concentrate political and economic power in the hands of the few at the expense of the many. 

Drawing on historical and social science research, as well as case studies of contemporary democratic innovations across the country, Civic Power calls for a broader approach to democratic reform, offering a critical framework and concrete suggestions to support those reforms that meaningfully redistribute power to citizens.

This original, timely effort offering fresh thinking about how best to pursue civic engagement and democracy reform. It offers concrete suggests to revive grassroots civil society and calls for novel approaches to governance, policymaking, civic technology, and institutional design. With these tools, readers can aim to address structural disparities to build a more inclusive, empowered, bottom-up democracy where communities and people have greater agency, voice, and civic power….(Excerpt)”.