Stefaan Verhulst

Paper by Carmel Martin, Keith Stockman and Joachim P. Sturmberg: “Big data provide the hope of major health innovation and improvement. However, there is a risk of precision medicine based on predictive biometrics and service metrics overwhelming anticipatory human centered sense-making, in the fuzzy emergence of personalized (big data) medicine. This is a pressing issue, given the paucity of individual sense-making data approaches. A human-centric model is described to address the gap in personal particulars and experiences in individual health journeys. The Patient Journey Record System (PaJR) was developed to improve human-centric healthcare by harnessing the power of person-centred data analytics using complexity theory, iterative health services and information systems applications over a 10 year period. PaJR is a web-based service supporting usually bi-weekly telephone calls by care guides to individuals at risk of readmissions.

This chapter describes a case study of the timing and context of readmissions using human (biopsychosocial) particular data which is based on individual experiences and perceptions with differing patterns of instability. This Australian study, called MonashWatch, is a service pilot using the PaJR system in the Dandenong Hospital urban catchment area of the Monash Health network. State public hospital big data – the Victorian HealthLinks Chronic Care algorithm provides case finding for high risk of readmission based on disease and service metrics. Monash Watch was actively monitoring 272 of 376 intervention patients, with 195 controls over 22 months (ongoing) at the time of the study.

Three randomly selected intervention cases describe a dynamic interplay of self-reported change in health and health care, medication, drug and alcohol use, social support structure. While the three cases were at similar predicted risk initially, their cases represented different statistically different time series configurations and admission patterns. Fluctuations in admission were associated with (mal)alignment of bodily health with psychosocial and environmental influences. However human interpretation was required to make sense of the patterns as presented by the multiple levels of data.

A human-centric model and framework for health journey monitoring illustrates the potential for ‘small’ personal experience data to inform clinical care in the era of big data predominantly based on biometrics and medical industrial process. ….(More)”.

Blog Post by Rebecca Rumbul: “Civic tech is on a huge growth curve. There is much more of it about now than there was ten years ago. At the same time, it is changing the scope and reach, and becoming much more mainstream. Ten years ago civic tech was hardly spoken about by anyone. It was largely the domain of ‘outsiders’, by which I mean campaigners and data specialists working outside the mainstream. Today civic tech is an accepted, respected and widely used form of engaging citizens.

The movement over that ten years has mostly been gradual, but over the last couple of years, there has been a really significant shift in how civic tech is viewed both by those within and outside the sector. A wider range of funders are more interested in supporting projects, government seems to have woken up to how civic tech can really be a spur to public engagement, and the word is getting out there to people on the street. Quite literally. At mySociety our FixMyStreet app now garners in the region of six thousand citizen reports of things like potholes and fly-tipping every week.

This maturing of attitudes towards and use of civic tech is wonderful to see. Those pioneers who saw a problem wrote a bit of code and put it online as a way of immediately finding a way to fix the problem have seen their often locally focused efforts contribute to the growth of a global phenomenon in a really short space of time.  And we are in a process here. There is no doubt that civic tech continues to grow and continues to make an impact way beyond its humble beginnings.

But the way civic tech develops is not uniform around the world, and it does need a number of circumstances to converge to make it really sing. That coming together of citizen awareness, government buy-in and funding support is crucial to its success. And there are other important factors too.

We’ve been researching the impact of civic tech around the world, and one of the most interesting things we’ve learned is that the movement is working with institutions much more today than it did five or ten years ago…(More)“.

Paulo A. de Souza Jr. at Nature: “The recent Brumadinho dam disaster in Brazil is an example of infrastructure failure with catastrophic consequences. Over 300 people were reported dead or missing, and nearly 400 more were rescued alive. The environmental impact is massive and difficult to quantify. The frequency of these disasters demonstrates that the current assets for monitoring integrity and generating alerting managers, authorities and the public to ongoing change in tailings are, in many cases, not working as they should. There is also the need for adequate prevention procedures. Monitoring can be perfect, but without timely and appropriate action, it will be useless. Good management therefore requires quality data. Undisputedly, management practices of industrial sites, including audit procedures, must improve, and data and metadata available from preceding accidents should be better used. There is a rich literature available about design, construction, operation, maintenance and decommissioning of tailing facilities. These include guidelines, standards, case studies, technical reports, consultancy and audit practices, and scientific papers. Regulation varies from country to country and in some cases, like Australia and Canada, it is controlled by individual state agencies. There are, however, few datasets available that are shared with the technical and scientific community more globally; particularly for prior incidents. Conspicuously lacking are comprehensive data related to monitoring of large infrastructures such as mining dams.

Today, Scientific Data published a Data Descriptor presenting a dataset obtained from 54 laboratory experiments on the breaching of fluvial dikes because of flow overtopping. (Re)use of such data can help improve our understanding of fundamental processes underpinning industrial infrastructure collapse (e.g., fluvial dike breaching, mining dam failure), and assess the accuracy of numerical models for the prediction of such incidents. This is absolutely essential for better management of floods, mitigation of dam collapses, and similar accidents. The authors propose a framework that could exemplify how data involving similar infrastructure can be stored, shared, published, and reused…(More)”.

Paper by Damion J.Bunders and KrisztinaVarró: Recently, the concept of the smart city has gained growing popularity. As cities worldwide have set the aim to harness digital technologies to their development, increasing focus came to lie on the potential challenges and concerns related to data-driven urban practices. In the existing literature, these challenges and concerns have been dominantly approached from a pragmatic approach based on the a priori assumed ‘goodness’ of the smart city; for a small group of critics, the very notion of the smart city is questionable. This paper takes the middle-way by interrogating how municipal and civil society stakeholders problematize the challenges and concerns related to data-driven practices in five Dutch cities, and how they act on these concerns in practice.

The lens of problematization posits that the ways of problematizing data-driven practices contribute to their actual enactment, and that this is an inherently political process. The case study shows that stakeholders do not only perceive practical challenges but are widely aware of and are (partly) pro-actively engaging with perceived normative-ethical and societal concerns, leading to different (sometimes inter-related) technological, legal/political, organizational, informative and participative strategies. Nonetheless, the explicit contestation of smart city policies through these strategies remains limited in scope. The paper argues that more research is needed to uncover the structural-institutional dynamics that facilitate and/or prevent the repoliticization of smart city projects….(More)”.

Stephen Moilanen at the Stanford Social Innovation Review: “Throughout Barack Obama’s presidency, technology company executives regularly sounded off on what, from their perspective, the administration might do differently. In 2010, Steve Jobs reportedly warned Obama that he likely wouldn’t win reelection, because his administration’s policies disadvantaged businesses like Apple. And in a speech at the 2016 Republican National Convention, Peter Thiel expressed his disapproval of the political establishment by quipping, “Instead of going to Mars, we have invaded the Middle East.”

Against this backdrop, one specific way Silicon Valley has tried to nudge Washington in a new direction is with respect to policy development. Specifically, leading technologists have begun encouraging policy makers to apply user-centered design (otherwise known as design thinking or human-centered design) to the public sector. The thinking goes that if government develops policy with users more squarely in mind, it might accelerate social progress rather than—as has often been the case—stifle it.

At a moment when fewer Americans than ever believe government is meeting their needs, a new approach that elevates the voices of citizens is long overdue. Even so, it would be misguided to view user-centered design as a cure-all for what ails the public sector. The approach holds great promise, but only in a well-defined set of circumstances.

User-Centered Design in the Public Policy Arena

The term “user-centered design” refers simply to a method of building products with an eye toward what users want and need.

To date, the approach has been applied primarily to the domain of for-profit start-ups. In recent months and years, however, supporters of user-centered design have sought to introduce it to other domains. A 2013 article authored by the head of a Danish design consultancy, for example, heralded the fact that “public sector design is on this rise.” And in the recent book Lean Impact, former Google executive and USAID official Ann-Mei Chang made an incisive and compelling case for why the social sector stands to benefit from this approach.

According to this line of thinking, we should be driving toward a world where government designs policy with an eye toward the individuals that stand to benefit from—or that could be hurt by—changes to public policy.

An Imperfect Fit

The merits of user-centered design in this context may seem self-evident. Yet it stands in stark contrast to how public sector leaders typically approach policy development. As leading design thinking theorist Jeanne Liedkta notes in her book Design Thinking for the Greater Good, “Innovation and design are [currently] the domain of experts, policy makers, planners and senior leaders. Everyone else is expected to step away.”

But while user-centered design has much to offer the policy development, it does not map perfectly onto this new territory….(More)”.

World Economic Forum Report: “As the digital technologies of the Fourth Industrial Revolution continue to drive change throughout all sectors of the global economy, a unique moment exists to create a more inclusive, innovative and resilient society. Central to this change is the use of data. It is abundantly available but if improperly used will be the source of dangerous and unwelcome results.

When data is shared, linked and combined across sectoral and institutional boundaries, a multiplier effect occurs. Connecting one bit with another unlocks new insights and understandings that often weren’t anticipated. Yet, due to commercial limits and liabilities, the full value of data is often unrealized. This is particularly true when it comes to using data for the common good. While public-private data collaborations represent an unprecedented opportunity to address some of the world’s most urgent and complex challenges, they have generally been small and limited in impact. An entangled set of legal, technical, social, ethical and commercial risks have created an environment where the incentives for innovation have stalled. Additionally, the widening lack of trust among individuals and institutions creates even more uncertainty. After nearly a decade of anticipation on the promise of public-private data collaboration – with relatively few examples of success at global scale – a pivotal moment has arrived to encourage progress and move forward….(More)”

(See also http://datacollaboratives.org/).

Co-Val: “In the… ‘Report on cross-country comparison on existing innovation and living labs’, Lars Fuglsang and Anne Vorre Hansen from Roskilde University describe various applications of living labs to decision-making. The basic two examples are living labs as a collaborative framework for changing perceptions and goals and living labs as an ecosystem for policy innovation.

Living labs can involve a change in mindset and goals as expressed in one paper on public sector innovation labs (Carstensen & Bason, 2012). Carstensen and Bason (2012) report the important story of the Danish Mindlab (2002-2018) – a cross-governmental innovation lab involving public sector organisations, citizens and businesses in creating new solutions for society. They argue that innovation labs are designed to foster collaboration since labs are platforms where multiple stakeholders can engage in interaction, dialogue, and development activities.  Innovation needs a different approach than everyday activities and a change in mindset and culture shift of employees towards thinking more systematically about innovation. Mindlab’s methodologies are anchored in design thinking, qualitative research and policy development, with the aim of capturing the subjective reality experienced by both citizens and businesses in the development of new solutions. Carstensen and Bason (2012) list the following key principles of Mindlab: take charge of on-going renewal, maintain top management backing, create professional empathy, insist on collaboration, do – don’t just think, recruit and develop likeable people, don’t be too big, communicate.

Also, Buhr et al. (2016) show how living labs can be important for developing and implementing collective goals and creating new opportunities for citizens to influence public affairs. They describe two cases in two suburban areas (located in Sweden and Finland), where the living lab approach was used to improve the feeling of belonging in a community. In one of the two suburbs studied, a living lab approach was used to change the lightning on a pathway that seemed unsafe; and in the other case, a living lab approach was used to strengthen the social community by renovating a kiosk and organizing varied activities for the citizens. Both living labs motivated the residents to work on societal goals for sustainability and choose solutions. The study indicates that a living lab approach can be used for gaining support for change and thereby increasing the citizens’ appreciation of a local area. Further, living labs may give citizens a feeling that they are being listened to. Living labs can thus create opportunities for citizens to develop the city together with municipal policy-makers and other stakeholders and enable policy-makers to respond to the expressed needs of the citizens….(More)”

Sidewalk Labs: “The long-term success of a neighborhood is predicated on its community members feeling a sense of ownership and belonging — of believing that, together, they are the stewards of their community. But it’s increasingly rare for 21st century city residents to join in the shared project of shaping their neighborhoods. Stop to consider: when was the last time you attended a community meeting? Volunteered at a neighborhood charity? Called your local representative? For many of us, the answer is never.

While there are many reasons for this decline in civic participation, one contributing factor is transparency. It’s not always clear how input will be used or if the organizations charged with community decisions are able to receive and act on that feedback. Another factor is that people may not always feel they are sufficiently knowledgeable on certain issues to meaningfully contribute.

To help address these challenges, governments and companies around the world have begun building tools that leverage technology to make participation more informed, transparent, and relevant to people’s daily lives.

The City of Barcelona is at the forefront of this trend, having created Decidim, an open-source digital tool inspired by social media that keeps residents up to date on processes and garners their input (the tool has since spread globally). The City of Bologna recently launched an Office of Civic Imaginationdesigned specifically to build greater participation through regulation, engagement labs throughout the city, and digital tools. Startups are also getting into the mix, such as Neighborland, which offers a customizable platform for engagement between city planners and communities. And some communities have even started creating their own tools, such as YouthScore, which allows youth to rate their neighborhoods based on their youth friendliness.

These examples are part of a promising trajectory towards inclusive digital participation that could enable people to engage with and enhance the places where they live, work, and visit. We’re excited by the idea of a future where community members can easily influence the decisions, spaces, and technologies that impact them — and where decision-making entities can be even more responsive to community input.

Our hope is that these tools kickstart a virtuous cycle: the more community members feel empowered to shape their communities, the more they will participate. The more they participate, the more decision-makers can be enabled to be more inclusive and responsive to community voices, inspiring more community members to participate. And so on.

As Barcelona, Bologna, and Neighborland show, there are many different ways that digital tools — in coordination with strong in-person and more traditional approaches — can unlock civic participation. One promising approach is leveraging technology to bring transparency into processes and decision points that could allow community members to better understand the issues at hand, provide input, and, hopefully, feel satisfied that their voices have been heard. What’s more, we believe that by providing community members with an informed, nuanced understanding of the required trade-offs of a decision, digital tools could even encourage more decisions that put collective good ahead of individual interests.

So we decided to create a prototype — one small contribution towards a more civically-engaged urban future.

Creating Collab

As a first step, we partnered with Digital Public Square, a Toronto-based non-profit that works globally to rethink and redesign how to leverage technology to support communities. Together, we came up with the idea for Collab, a digital tool that could support communities hoping to increase participation and make more inclusive, collaborative decisions….(More)”.

Paper by Joy Aceron: “… explains why and how a reform program that opened up spaces for participatory budgeting was ultimately unable to result in pro-citizen power shifts that transformed governance. The study reviews the design and implementation of Bottom-Up Budgeting (BuB), the nationwide participatory budgeting (PB) program in the Philippines, which ran from 2012 to 2016 under the Benigno Aquino government. The findings underscore the importance of institutional design to participatory governance reforms. BuB’s goal was to transform local government by providing more space for civil society organizations (CSOs) to co-identify projects with the government and to take part in the budgeting process, but it did not strengthen CSO or grassroots capacity to hold their Local Government Units (LGUs) accountable.

The BuB design had features that delivered positive gains towards citizen empowerment, including: (1) providing equal seats for CSOs in the Local Poverty Reduction Action Team (LPRAT), which are formally mandated to select proposed projects (in contrast to the pre-existing Local Development Councils (LDCs), which have only 25 percent CSO representation); (2) CSOs identified their LPRAT representatives themselves (as opposed to local chief executives choosing CSO representatives, as in the LDCs); and (3) LGUs were mandated to follow participatory requirements to receive additional funding. However, several aspects of the institutional design shifted power from local governments to the central government. This had a “centralizing effect”…

This study argues that because of these design problems, BuB fell short in achieving its main political reform agenda of empowering the grassroots—particularly in enabling downward accountability that could have enabled lasting pro-citizen power shifts. It did not empower local civil society and citizens to become a countervailing force vis-à-vis local politicians in fiscal governance. BuB is a case of a reform that provided a procedural mechanism for civil society input into national agency decisions but was unable to improve government responsiveness. It provided civil society with ‘voice’, but was constrained in enabling ‘teeth’. Jonathan Fox (2014) refers to “voice” as citizen inputs, feedback and action, while “teeth” refer to the capacity of the state to respond to voice.

Finally, the paper echoes the results of other studies which find that PB programs become successful when complemented by other institutional and state democratic capacity-building reforms and when they are part of a broader progressive change agenda. The BuB experience suggests that to bolster citizen oversight, it is essential to invest sufficient support and resources in citizen empowerment and in creating an enabling environment for citizen oversight….(More)”.

Colin Lecher at The Verge: “In a first for a city in the United States, San Francisco has voted to ban its government agencies from using facial recognition technology.

The city’s Board of Supervisors voted eight to one to approve the proposal, set to take effect in a month, that would bar city agencies, including law enforcement, from using the tool. The ordinance would also require city agencies to get board approval for their use of surveillance technology, and set up audits of surveillance tech already in use. Other cities have approved similar transparency measures.“

The plan, called the Stop Secret Surveillance Ordinance, was spearheaded by Supervisor Aaron Peskin. In a statement read ahead of the vote, Peskin said it was “an ordinance about having accountability around surveillance technology.”

“This is not an anti-technology policy,” he said, stressing that many tools used by law enforcement are still important to the city’s security. Still, he added, facial recognition is “uniquely dangerous and oppressive.”

The ban comes amid a broader debate over facial recognition, which can be used to rapidly identify people and has triggered new questions about civil liberties. Experts have raised specific concerns about the tools, as studies have demonstrated instances of troubling bias and error rates.

Microsoft, which offers facial recognition tools, has called for some form of regulation for the technology — but how, exactly, to regulate the tool has been contested. Proposals have ranged from light regulation to full moratoriums. Legislation has largely stalled, however.

San Francisco’s decision will inevitably be used as an example as the debate continues and other cities and states decide whether and how to regulate facial recognition. Civil liberties groups like the ACLU of Northern California have already thrown their support behind the San Francisco plan, while law enforcement in the area has pushed back….(More)”.