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)”.

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)”.

European E-Democracy in Practice

Curated on Posted on by Stefaan Verhulst

Book by Hennen, Leonhard (et al.): “This open access book explores how digital tools and social media technologies can contribute to better participation and involvement of EU citizens in European politics. By analyzing selected representative e-participation projects at the local, national and European governmental levels, it identifies the preconditions, best practices and shortcomings of e-participation practices in connection with EU decision-making procedures and institutions. The book features case studies on parliamentary monitoring, e-voting practices, and e-publics, and offers recommendations for improving the integration of e-democracy in European politics and governance. Accordingly, it will appeal to scholars as well as practitioners interested in identifying suitable e-participation tools for European institutions and thus helps to reduce the EU’s current democratic deficit….(More)”.

Belgian experiment that Aristotle would have approved of

Curated on Posted on by Stefaan Verhulst

The Economist: “In a sleepy corner of Belgium, a democratic experiment is under way. On September 16th, 24 randomly chosen Germanophones from the country’s eastern fringe took their seats in a Citizens’ Council. They will have the power to tell elected officials which issues matter, and for each such issue to task a Citizens’ Assembly (also chosen at random) with brainstorming ideas on how to solve them. It’s an engaged citizen’s dream come true.

Belgium’s German-speakers are an often-overlooked minority next to their Francophone and Flemish countrymen. They are few in number—just 76,000 people out of a population of 11m—yet have a distinct identity, shaped by their proximity to Germany, the Netherlands and Luxembourg. Thanks to Belgium’s federal system the community is thought to be the smallest region of the EU with its own legislative powers: a parliament of 25 representatives and a government of four decides on policies related to issues including education, sport, training and child benefits.

This new system takes democracy one step further. Based on selection by lottery—which Aristotle regarded as real democracy, in contrast to election, which he described as “oligarchy”—it was trialled in 2017 and won enthusiastic reviews from participants, officials and locals.

Under the “Ostbelgien Model”, the Citizens’ Council and the assemblies it convenes will run in parallel to the existing parliament and will set its legislative agenda. Parliamentarians must consider every proposal that wins support from 80% of the council, and must publicly defend any decision to take a different path.

Some see the project as a tool that could counter political discontent by involving ordinary folk in decision-making. But for Alexander Miesen, a Belgian senator who initiated the project, the motivation is cosier. “People would like to share their ideas, and they also have a lot of experience in their lives which you can import into parliament. It’s a win-win,” he says.

Selecting decision-makers by lottery is unusual these days, but not unknown: Ireland randomly selected the members of the Citizens’ Assembly that succeeded in breaking the deadlock on abortion laws. Referendums are a common way of settling important matters in several countries. But in Eupen, the largest town in the German-speaking region, citizens themselves will come up with the topics and policies which parliamentarians then review, rather than expressing consent to ideas proposed by politicians. Traditional decision-makers still have the final say, but “citizens can be sure that their ideas are part of the process,” says Mr Miesen….(More)”.

Meaningfully Engaging Youth in the Governance of the Global Refugee System

Curated on Posted on by Stefaan Verhulst

Bushra Ebadi at the World Refugee Council Research Paper Series: “Young people aged 15 to 35 comprise one-third of the world’s population, yet they are largely absent from decision-making fora and, as such, unaccounted for in policy making, programming and laws. The disenfranchisement of displaced youth is a particular problem, because it further marginalizes young people who have already experienced persecution and been forcibly displaced.

This paper aims to demonstrate the importance of including displaced youth in governance and decision making, to identify key barriers to engagement that displaced youth face, and to highlight effective strategies for engaging youth. Comprehensive financial, legal, social and governance reforms are needed in order to facilitate and support the meaningful engagement of youth in the refugee and IDP systems. Without these reforms and partnerships between youth and other diverse stakeholders, it will be difficult to achieve sustainable solutions for forcibly displaced populations and the communities that host them….(More)”.

The fuzzy concept of collaborative governance: A systematic review of the state of the art

Curated on Posted on by Stefaan Verhulst

Paper by Agnes Batory and Sara Svensson: “Collaborative approaches to policy-making are high on the agenda for most European governments and are key to European Commission activities with respect to the transformation of public administration in the European Union (EU) (Hammerschmid et al., 2016; European Commission, 2016). A long line of politicians has stated the need for government units to overcome organizational cleavages and reach out to citizens and stakeholders in order to address difficult policy problems and deliver public services more efficiently. Collaborative approaches to policy-making have also been advocated as a way to close the seemingly growing gap between government and citizens and thus to alleviate normative problems commonly besetting Western democracies in the last decades. Collaborative governance has received considerable attention from public administration scholars and is the subject of a burgeoning body of academic literature in policy studies, public management and democratic theory. However, the rapid uptake of collaborative governance and related concepts, such as coordination, cooperation, joined-up governance, network governance (e.g., Robinson 2006) and interactive governance (Michels, 2011), led to a rather amorphous, diffused discussion, rather than a coherent narrative. Attempts to structure the debate have so far exclusively focused on the academic literature in English. This article aims to facilitate the synthesis and consolidation of work undertaken so far in a way that is more culturally sensitive and more open to developments taking place in the world of practice.

More specifically, this article first seeks to map the current state of the art. It pinpoints key dimensions of variation in how collaborative governance is defined in the academic literature through a qualitative analysis of influential scholarly work and provides a systematic literature review of a corpus of over 700 article abstracts. The analysis shows that scholarly articles differ in their conceptualisation of collaborative governance along at least five dimensions, which concern the public-private (governmental-non-governmental) divide; agency; organisational aspects; scope and locus within the policy process; and normative assumptions. Second, the paper extends this analysis to incorporate some preliminary findings on relevant ‘grey’ literature on collaborative governance in Europe – which seems to be in closer touch with developments of high relevance for practice – in order to indicate whether and to what extent the scholarly and the practitioner-oriented literature overlap or differ in orientation and subjects covered. Finally, the paper takes stock of the national connotations of the term in different European languages, which aims to mitigate the Anglo-Saxon bias in the literature. For the second and third objectives, the paper relies on responses from teams of academic public administration experts in ten EU and European Free Trade Association (EFTA) countries. The methodological approach for each of these steps is described in the respective sections of the paper. The penultimate section provides a synthesis of the results, including recommendations for reconceptualization and future research….(More)”.

76 things you can do to boost civic engagement

Curated on Posted on by Stefaan Verhulst

Rebecca Winthrop and Meg Heubeck at Brookings: “It isn’t too complicated. Civic engagement is the glue that holds self-government together. Yet civic participation and engagement has been on the decline for several decades. Therefore, each and every one of us must be as active and involved in our community and country as possible. Self-government is hard work and requires effort. Action is essential to maintaining the foundations of our democracy, no matter which political party happens to be in power.

To be a truly involved citizen, we must reconnect with our founding documents. We must learn and practice the skills of civic participation beginning with voting and moving onto legislating, speaking out, and building coalitions to solve problems on the local, state, and federal levels.

While by no means comprehensive, the “Democracy 76” list below provides specific and practical actions that we all can take to be an involved citizen. The list is broken into five actions that are essential components for engagement. It is expressly free from politics and partisanship and should be undertaken by all Americans—regardless of political perspectives or affiliation….this list has contributed to the call to action of the newly launched Purple Project for Democracy, which has as its central mission to create a more active, engaged American citizenry, ultimately strengthening the very foundations of our democratic form of government. This is certainly something the founding fathers would support….(Full List)”.

Our Futures: By the people, for the people

Curated on Posted on by Stefaan Verhulst

Guide by Laurie Smith and Kathy Peach: “This is a guide to how mass involvement with shaping the future can solve complex problems.

Moving beyond citizen assemblies and traditional public engagement, participatory futures techniques help people to develop a collective image of the future they want, so that we can make better, more informed decisions.

Governments, city leaders, public institutions, funders, and civil society must be at the forefront of this approach, supporting it through funding, strategy and practice.

Our guide contains practical suggestions for how to do this. Examples include:

  • Carrying out publicly-funded, mission-orientated research that is informed by participatory futures exercises.
  • Creating new legislation that requires UK Government departments to use these approaches to inform decision-making and strategies.
  • Embedding these approaches in the Civil Service Competency Framework and equivalent frameworks for local government and charities…(More)”.