Adolescent Mental Health: Using A Participatory Mapping Methodology to Identify Key Priorities for Data Collaboration


Blog by Alexandra Shaw, Andrew J. Zahuranec, Andrew Young, Stefaan G. Verhulst, Jennifer Requejo, Liliana Carvajal: “Adolescence is a unique stage of life. The brain undergoes rapid development; individuals face new experiences, relationships, and environments. These events can be exciting, but they can also be a source of instability and hardship. Half of all mental conditions manifest by early adolescence and between 10 and 20 percent of all children and adolescents report mental health conditions. Despite the increased risks and concerns for adolescents’ well-being, there remain significant gaps in availability of data at the country level for policymakers to address these issues.

In June, The GovLab partnered with colleagues at UNICEF’s Health and HIV team in the Division of Data, Analysis, Planning & Monitoring and the Data for Children Collaborative — a collaboration between UNICEF, the Scottish Government, and the University of Edinburgh — to design and apply a new methodology of participatory mapping and prioritization of key topics and issues associated with adolescent mental health that could be addressed through enhanced data collaboration….

The event led to three main takeaways. First, the topic mapping allows participants to deliberate and prioritize the various aspects of adolescent mental health in a more holistic manner. Unlike the “blind men and the elephant” parable, a topic map allows the participants to see and discuss  the interrelated parts of the topic, including those which they might be less familiar with.

Second, the workshops demonstrated the importance of tapping into distributed expertise via participatory processes. While the topic map provided a starting point, the inclusion of various experts allowed the findings of the document to be reviewed in a rapid, legitimate fashion. The diverse inputs helped ensure the individual aspects could be prioritized without a perspective being ignored.

Lastly, the approach showed the importance of data initiatives being driven and validated by those individuals representing the demand. By soliciting the input of those who would actually use the data, the methodology ensured data initiatives focused on the aspects thought to be most relevant and of greatest importance….(More)”

Citizen initiatives facing COVID-19: Due to spontaneous generation or the product of social capital in Mexico City?


UNDP: “Since the COVID-19 pandemic arrived in Mexico, multiple citizen responses[1] have emerged to tackle its impacts: digital aid platforms such as Frena la Curva (Stop the curve) and México Covid19;  groups of makers that design medical and protective equipment; Zapotec indigenous women that teach how to make hand sanitizer at home; public buses that turn into mobile markets; and much more.

There are initiatives that aid 10, 20, 3,000 or more people; initiatives that operate inside a housing unit, a municipality or across the City. Some responses have come from civil society organizations; others from collectives of practitioners or from groups of friends and family; there are even those made out of groups of strangers that the pandemic turned into partners working for the same goal….

Within the plurality of initiatives that have emerged, sometimes, seemingly in a spontaneous way, there is a common denominator: people are reacting in a collaboratively way to the crisis to solve the needs that the pandemic is leaving behind.

Different research studies connect social cohesion and social capital with the response’s capacity of a community in situations of crisis and natural disasters; and with its subsequent recovery. These concepts —derived from sociology— include aspects such as the level of union; relationships and networks; and interaction between people in a community.

This can be seen when, for example, a group of people in a neighborhood gets together to buy groceries for neighbors who have lost their incomes. Also, when a collective of professionals react to the shortages of protective equipment for health workers by creating low-cost prototypes, or when a civil organization collaborates with local authorities to bring water to households that lack access to clean water.

It would seem that a high rate of social capital and social cohesion might ease the rise of the citizen initiatives that aim to tackle the challenges that ensue from the pandemic. These do not come out of nowhere….(More)”.

Covid-19 data is a public good. The US government must start treating it like one.


Ryan Panchadsaramarchive at MIT Technology Review: “…When the Trump administration stripped the Centers for Disease Control and Prevention (CDC) of control over coronavirus data, it also took that information away from the public….

This is also an opportunity for HHS to make this data machine readable and thereby more accessible to data scientists and data journalists. The Open Government Data Act, signed into law by President Trump, treats data as a strategic asset and makes it open by default. This act builds upon the Open Data Executive Order, which recognized that the data sets collected by the government are paid for by taxpayers and must be made available to them. 

As a country, the United States has lagged behind in so many dimensions of response to this crisis, from the availability of PPE to testing to statewide mask orders. Its treatment of data has lagged as well. On March 7, as this crisis was unfolding, there was no national testing data. Alexis Madrigal, Jeff Hammerbacher, and a group of volunteers started the COVID Tracking Project to aggregate coronavirus information from all 50 state websites into a single Google spreadsheet. For two months, until the CDC began to share data through its own dashboard, this volunteer project was the sole national public source of information on cases and testing. 

With more than 150 volunteers contributing to the effort, the COVID Tracking Project sets the bar for how to treat data as an asset. I serve on the advisory board and am awed by what this group has accomplished. With daily updates, an API, and multiple download formats, they’ve made their data extraordinarily useful. Where the CDC’s data is cited 30 times in Google Scholar and approximately 10,000 times in Google search results, the COVID Tracking Project data is cited 299 times in Google Scholar and roughly 2 million times in Google search results.

Sharing reliable data is one of the most economical and effective interventions the United States has to confront this pandemic. With the Coronavirus Task Force daily briefings a thing of the past, it’s more necessary than ever for all covid-related data to be shared with the public. The effort required to defeat the pandemic is not just a federal response. It is a federal, state, local, and community response. Everyone needs to work from the same trusted source of facts about the situation on the ground. Data is not a partisan affair or a bureaucratic preserve. It is a public trust—and a public resource….(More)”.

Surprising Alternative Uses of IoT Data


Essay by Massimo Russo and Tian Feng: “With COVID-19, the press has been leaning on IoT data as leading indicators in a time of rapid change. The Wall Street Journal and New York Times have leveraged location data from companies like TomTom, INRIX, and Cuebiq to predict economic slowdown and lockdown effectiveness.¹ Increasingly we’re seeing use cases like these, of existing data being used for new purposes and to drive new insights.² Even before the crisis, IoT data was revealing surprising insights when used in novel ways. In 2018, fitness app Strava’s exercise “heatmap” shockingly revealed locations, internal maps, and patrol routes of US military bases abroad.³

The idea of alternative data is also trending in the financial sector. Defined in finance as data from non-traditional data sources such as satellites and sensors, financial alternative data has grown from a niche tool used by select hedge funds to an investment input for large institutional investors.⁴ The sector is forecasted to grow seven-fold from 2016 to 2020, with spending nearing $2 billion.⁵ And it’s easy to see why: alternative data linked to IoT sources are able to give investors a real time, scalable view into how businesses and markets are performing.

This phenomenon of repurposing IoT data collected for one purpose for use for another purpose will extend beyond crisis or financial applications and will be focus of this article. For the purpose of our discussion, we’ll define intended data use as ones that deliver the value directly associated with the IoT application. On the other hand, alternative data use as ones linked to insights and application using the data outside of the intent of the initial IoT application.⁶ Alternative data use is important because it is incremental value outside of the original application.

Why should we think about this today? Increasingly CTOs are pursuing IoT projects with a fixed application in mind. Whereas early in IoT maturity, companies were eager to pilot the technology, now the focus has rightly shifted to IoT use cases with tangible ROI. In this environment, how should companies think about external data sharing when potential use cases are distant, unknown, or not yet existent? How can companies balance the abstract value of future use cases with the tangible risk of data misuse?…(More)”.

The Obsolescence of Interfaces


Essay by Carlos A. Scolari: “COVID-19 has highlighted the need to redesign current interfaces to tackle an increasingly complex and uncertain world….

Whenever somebody says the word interface one immediately thinks of a keyboard, a mouse or a joystick, and an infinite number of icons on a screen… This interface – also called a graphical user interface – is a place for interaction, the frontier space where the analogical (double-clicking the mouse) becomes digital (a file, made up of bits, opens). But the graphical user interface is not limited to that exchange between individual and technology: that relationship is mediated by an “interaction grammar” that, in order that things function, must be shared between designer and user.

This idea – the interface understood as a network of actors that are human (user, designer, etc.), technological (mouse, keyboard, screen, apps, Internet, etc.) and institutional (interaction grammar, businesses, laws, etc.) – can be taken far beyond the classical image of the individual against the digital machine. If we scale the concept, we can consider the school as an interface where actors that are human (teachers, students, governors, families, etc.), technological (blackboards, benches, books, pencils, projectors, tablets, etc.) and institutional (school management, PTA, Department of Education, Ministry, etc.) maintain different types of relationships with each other and carry forward a series of processes.

Educational interfaces

For years there has been talk of a “crisis in the school system” and of “educational innovation”. Rivers of ink and seas of bits have issued forth on this question in recent years. Back in 2007, in an article published in La Vanguardia, Manuel Castells warned: “The idea that young people today should bear the burden of a rucksack full of boring textbooks, defined by ministerial bureaucrats, and should be locked up in a classroom to endure a discourse irrelevant to their perspective, and should put up with all this in the name of the future, is simply absurd”. For some, the solution simply involves incorporating “educational technology” into the classroom and training the teachers. However, for others, we believe that the issue is much more complex and that it demands another type of focus. Perhaps a view from the perspective of interfaces might be useful for us….

Many other interfaces that were already showing their limitations from a couple of decades ago, such as political interfaces (parties) or social interfaces (trade unions), must pass through processes of redesign if we want them to continue fulfilling their representative roles. COVID-19 has added hospitals and healthcare centres to this list: during the worst weeks of the pandemic, these interfaces had to be redesigned in real time in order to tackle the boom in the number of patients entering their emergency departments.

Another interface that will not escape redesign is the city. Urban interfaces will have to be rethought in all their dimensions, from the relationship between the public and the private space to the spaces for the flow and permanence of pedestrians while maintaining a “safe social distance”. Even highly innovative spaces on an urban level, such as the “super-blocks” of Barcelona or the new co-working rooms at the UPF, are not prepared for the post-pandemic world and will have to be redesigned.

Nearly all the interfaces that have been mentioned (compulsory state schools, political parties, trade unions, hospitals) were created during Modernity to cater for the needs of a type of industrial mass society that is in the process of disappearing. COVID-19 has done nothing if not slit open all of these interfaces and evidence their incapacity to tackle an increasingly complex and uncertain world….(More)”.

COVID-19 from the Margins: What We Have Learned So Far


Blog by Silvia Masiero, Stefania Milan and Emiliano Treré: “Since the World Health Organisation declared the outbreak of COVID-19 a pandemic on 11 March 2020, narratives of the virus outbreak centred on counting and measuring have became dominant in public discourse. Enumerating and comparing cases and locations, victims or the progressive occupancy of intensive care units, policymakers and experts alike have turned data into the condition of existence of the first pandemic of the datafied society. However, many communities at the margins—from workers in the informal economy to low-income countries to victims of domestic violence—were left in the dark.

This is why our attention of researchers of datafication across the many Souths inhabiting the globe turned into the untold stories of the pandemic. We decided to make space for narratives from those individuals, communities, countries and regions that have thus far remained at the margins of global news reports and relief efforts. The multilingual blog COVID-19 from the Margins, launched on 4 May 2020, hosts stories of invisibility, including from migrants and communities living in countries and regions with limited statistical capacity or in cities and slums where pre-existing inequality and vulnerability have been augmented by the pandemic. In entering the third month of this initiative, a reflection on the main threads emerged from the 28 articles published so far is in order to devise our look to the future. In what follows, we identify four threads that have informed discussions on this blog so far, namely data visualisation, perpetuated vulnerabilities and inequalities, datafied social policies, and digital activism at the time of the pandemic…(More)”.

It’s complicated: what the public thinks about COVID-19 technologies


Imogen Parker at Ada Lovelace Institute: “…Tools of this societal importance need to be shaped by the public. Given the technicality and complexity, that means going beyond surface-level opinions captured through polling and focus groups and creating structures to deliberate with groups of informed citizens. That’s hard to do well, and at the pace needed to keep up with policy and technology, but difficult problems are the ones that most need to be solved.

To help bring much-needed public voices into this debate at pace, we have drawn out emergent themes from three recent in-depth public deliberation projects, that can bring insight to bear on the questions of health apps and public health identity systems.

While there are no green lights, red lines – or indeed silver bullets – there are important nuances and strongly held views about the conditions that COVID-19 technologies would need to meet. The report goes into detailed lessons from the public, and I would like to add to those by drawing out here aspects that are consistently under-addressed in discussions I’ve heard about these tools in technology and policy circles.

  1. Trust isn’t just about data or privacy. The technology must be effective – and be seen to be effective. Too often, debates about public acceptability lapse into flawed and tired arguments about privacy vs public health; or citizens’ trust in a technology being confused with reassurances about data protection or security frameworks against malicious actors. First and foremost people need to trust the technology works – they need to trust that it can solve a problem, that it won’t fail, and it can be relied on. The public discussion must be about the outcome of the technology – not just its function. This is particularly vital in the context of public health, which affects everyone in society.
  2. Any application linked to identity is seen as high-stakes. Identity matters and is complex – and there is anxiety about the creation of technological systems that put people in pre-defined boxes or establishes static categories as the primary mechanisms by which they are known, recognised and seen. Proportionality (while not expressed as such) runs deep in public consciousness and any intrusion will require justification, not simply a rallying call for people to do their duty.
  3. Tools must proactively protect against harm. Mechanisms for challenge or redress need to be built around the app – and indeed be seen as part of the technology. This means that legitimate fears that discrimination or prejudice will arise must be addressed head on, and lower uptake from potentially disadvantaged groups that may legitimately mistrust surveillance systems must be acknowledged and mitigated.
  4. Apps will be judged as part of the system they are embedded into. The whole system must be trustworthy, not just the app or technology – and that encompasses those who develop and deploy it and those who will use it out in the world. An app – however technically perfect – can still be misused by rogue employers, or mistrusted through fear of government overreach or scope creep.
  5. Tools are seen by the public as political and social. Technology developers need to understand that they are shifting the social-political fabric of society during a crisis, and potentially beyond. Tech cannot be decoupled or isolated from questions of the nature of the society it will shape – solidaristic or individualistic; divisive or inclusive….(More)”.

Blockchain for the public good


Blog by Camille Crittenden: “Over the last year, I have had the privilege to lead the California Blockchain Working Group, which delivered its report to the Legislature in early July. Established by AB 2658, the 20-member Working Group comprised experts with backgrounds in computer science, cybersecurity, information technology, law, and policy. We were charged with drafting a working definition of blockchain, providing advice to State offices and agencies considering implementation of blockchain platforms, and offering guidance to policymakers to foster an open and equitable regulatory environment for the technology in California.

What did we learn? Enough to make a few outright recommendations as well as identify areas where further research is warranted.

A few guiding principles: Refine the application of blockchain systems first on things, not people. This could mean implementations of blockchain for tracing food from farms to stores to reduce the economic and human harm of food-borne illnesses; reducing paperwork and increasing reliability of tracing vehicles and parts from manufacturing floor to consumer to future owners or dismantlers; improving workflows for digitizing, cataloging and storing the reams of documents held in the State Archives.

Similarly, blockchain solutions could be implemented for public vital records, such as birth, death and marriage certificates or real estate titles without risk of compromising private information. Greater caution should be taken in applications that affect public service delivery to populations in precarious circumstances, such as the homeless or unemployed. Overarching problems to address, especially for sensitive records, include the need for reliable, persistent digital identification and the evolving requirements for cybersecurity….

The Working Group’s final report, Blockchain in California: A Roadmap, avoids the magical thinking or technological solutionism that sometimes attends shiny new tech ideas. Blockchain won’t cure Covid-19, fix systemic racism, or reverse alarming unemployment trends. But if implemented conscientiously on a case-by-case basis, it could make a dent in improving health outcomes, increasing autonomy for property owners and consumers, and alleviating some bureaucratic practices that may be a drag on the economy. And those are contributions we can all welcome….(More)”.

Medical data has a silo problem. These models could help fix it.


Scott Khan at the WEF: “Every day, more and more data about our health is generated. Data, which if analyzed, could hold the key to unlocking cures for rare diseases, help us manage our health risk factors and provide evidence for public policy decisions. However, due to the highly sensitive nature of health data, much is out of reach to researchers, halting discovery and innovation. The problem is amplified further in the international context when governments naturally want to protect their citizens’ privacy and therefore restrict the movement of health data across international borders. To address this challenge, governments will need to pursue a special approach to policymaking that acknowledges new technology capabilities.

Understanding data siloes

Data becomes siloed for a range of well-considered reasons ranging from restrictions on terms-of-use (e.g., commercial, non-commercial, disease-specific, etc), regulations imposed by governments (e.g., Safe Harbor, privacy, etc.), and an inability to obtain informed consent from historically marginalized populations.

Siloed data, however, also creates a range of problems for researchers looking to make that data useful to the general population. Siloes, for example, block researchers from accessing the most up-to-date information or the most diverse, comprehensive datasets. They can slow the development of new treatments and therefore, curtail key findings that can lead to much needed treatments or cures.

Even when these challenges are overcome, the incidences of data mis-use – where health data is used to explore non-health related topics or without an individual’s consent – continue to erode public trust in the same research institutions that are dependent on such data to advance medical knowledge.

Solving this problem through technology

Technology designed to better protect and decentralize data is being developed to address many of these challenges. Techniques such as homomorphic encryption (a cryptosystem that encrypts data with a public key) and differential privacy (a system leveraging information about a group without revealing details about individuals) both provide means to protect and centralize data while distributing the control of its use to the parties that steward the respective data sets.

Federated data leverages a special type of distributed database management system that can provide an alternative approach to centralizing encoded data without moving the data sets across jurisdictions or between institutions. Such an approach can help connect data sources while accounting for privacy. To further forge trust in the system, a federated model can be implemented to return encoded data to prevent unauthorized distribution of data and learnings as a result of the research activity.

To be sure, within every discussion of the analysis of aggregated data lies challenges with data fusion between data sets, between different studies, between data silos, between institutions. Despite there being several data standards that could be used, most data exist within bespoke data models built for a single purpose rather than for the facilitation of data sharing and data fusion. Furthermore, even when data has been captured into a standardized data model (e.g., the Global Alliance for Genomics and Health offers some models for standardizing sensitive health data), many data sets are still narrowly defined. They often lack any shared identifiers to combine data from different sources into a coherent aggregate data source useful for research. Within a model of data centralization, data fusion can be addressed through data curation of each data set, whereas within a federated model, data fusion is much more vexing….(More)“.

Social-Change Games Can Help Us Understand the Public Health Choices We Face


Blog by the Hastings Institute: “Before there was the Covid-19 pandemic, there was Pandemic. This tabletop game, in which players collaborate to fight disease outbreaks, debuted in 2007. Expansions feature weaponized pathogens, historic pandemics, zoonotic diseases, and vaccine development races. Game mechanics modelled on pandemic vectors provide multiple narratives: battle, quest, detection, discovery. There is satisfaction in playing “against” disease–and winning.

Societies globally are responding to Covid-19 under differing political and economic conditions. In the United States, these conditions include mass unemployment and entrenched social inequalities that drive health disparities by race, class, and neighborhood. Real pandemic is not as tidy as a game. But can games, and the immense appetite for them, support understanding about the societal challenges we now face? Yes.

A well-designed game is structured as a flow chart or a decision tree. Games simulate challenges, require choices, and allow players to see the consequences of their decisions. Visual and narrative elements enhance these vicarious experiences. Game narratives can engage human capacities such as empathy, helping us to imagine the perspectives of people unlike ourselves. In The Waiting Game (2018), an award-winning digital single-player game designed by news outlets ProPublica and WNYC and game design firm Playmatics, the player starts by choosing one of five characters representing asylum seekers. The player is immersed in a day-by-day depiction of their character’s journey and experiences. Each “day,” the player must make a choice: give up or keep going?

Games can also engage the moral imagination by prompting players to reflect on competing values and implicit biases. In the single-player game Parable of the Polygons (2014), a player moves emoji-like symbols into groups. This quick game visualizes how decisions aimed at making members of a community happier can undermine a shared commitment to diversity when happiness relies on living near people “like me.” It is free-to-play on the website of Games for Change (G4C), a nonprofit organization that promotes the development and use of games to imagine and respond to real-world problems.

Also in the G4C arcade is Cards Against Calamity (2018), which focuses on local governance in a coastal town. This game, developed by 1st Playable Productions and the Environmental Law Institute, aims to help local policymakers foresee community planning challenges in balancing environmental protections and economic interests. Plague Inc. (2012) flips the Pandemic script by having players assume the pathogen role, winning by spreading. This game has been used as a teaching tool and has surged in popularity during disease outbreak: in January 2020, its designers issued a statement reminding players that Plague Inc. should not be used for pandemic modeling….(More)”.