Our data, our society, our health: a vision for inclusive and transparent health data science in the UK and Beyond


Paper by Elizabeth Ford et al in Learning Health Systems: “The last six years have seen sustained investment in health data science in the UK and beyond, which should result in a data science community that is inclusive of all stakeholders, working together to use data to benefit society through the improvement of public health and wellbeing.

However, opportunities made possible through the innovative use of data are still not being fully realised, resulting in research inefficiencies and avoidable health harms. In this paper we identify the most important barriers to achieving higher productivity in health data science. We then draw on previous research, domain expertise, and theory, to outline how to go about overcoming these barriers, applying our core values of inclusivity and transparency.

We believe a step-change can be achieved through meaningful stakeholder involvement at every stage of research planning, design and execution; team-based data science; as well as harnessing novel and secure data technologies. Applying these values to health data science will safeguard a social license for health data research, and ensure transparent and secure data usage for public benefit….(More)”.

Transparency, Fairness, Data Protection, Neutrality: Data Management Challenges in the Face of New Regulation


Paper by Serge Abiteboul and Julia Stoyanovich: “The data revolution continues to transform every sector of science, industry and government. Due to the incredible impact of data-driven technology on society, we are becoming increasingly aware of the imperative to use data and algorithms responsibly — in accordance with laws and ethical norms. In this article we discuss three recent regulatory frameworks: the European Union’s General Data Protection Regulation (GDPR), the New York City Automated Decisions Systems (ADS) Law, and the Net Neutrality principle, that aim to protect the rights of individuals who are impacted by data collection and analysis. These frameworks are prominent examples of a global trend: Governments are starting to recognize the need to regulate data-driven algorithmic technology. 


Our goal in this paper is to bring these regulatory frameworks to the attention of the data management community, and to underscore the technical challenges they raise and which we, as a community, are well-equipped to address. The main .take-away of this article is that legal and ethical norms cannot be incorporated into data-driven systems as an afterthought. Rather, we must think in terms of responsibility by design, viewing it as a systems requirement….(More)”

Digital Pro Bono: Leveraging Technology to Provide Access to Justice


Paper by Kathleen Elliott Vinson and Samantha A. Moppett: “…While individuals have the constitutional right to legal assistance in criminal cases, the same does not hold true for civil matters. Low-income Americans are unable to gain access to meaningful help for basic legal needs. Although legal aid organizations exist to help low-income Americans who cannot afford legal representation, the resources available are insufficient to meet current civil legal needs. Studies show more than 80 percent of the legal needs of low-income Americans go unaddressed every year. 

This article examines how law students, law schools, the legal profession, legal services’ agencies, and low-income individuals who need assistance, all have a shared interest—access to justice—and can work together to reach the elusive goal in the Pledge of Allegiance of “justice for all.” It illustrates how their collaborative leveraging of technology in innovative ways like digital pro bono services, is one way to provide access to justice. It discusses ABA Free Legal Answers Online, the program that the ABA pioneered to help confront the justice gap in the United States. The program provides a “virtual legal advice clinic” where attorneys answer civil legal questions that low-income residents post on free, secure, and confidential state-specific websites. The article provides a helpful resource of how law schools can leverage this technology to increase access to justice for low-income communities while providing pro bono opportunities for attorneys and students in their state…(More)”.

PayStats helps assess the impact of the low-emission area Madrid Central


BBVA API Market: “How do town-planning decisions affect a city’s routines? How can data help assess and make decisions? The granularity and detailed information offered by PayStats allowed Madrid’s city council to draw a more accurate map of consumer behavior and gain an objective measurement of the impact of the traffic restriction measures on commercial activity.

In this case, 20 million aggregate and anonymized transactions with BBVA cards and any other card at BBVA POS terminals were analyzed to study the effect of the changes made by Madrid’s city council to road access to the city center.

The BBVA PayStats API is targeted at all kinds of organizations including the public sector, as in this case. Madrid’s city council used it to find out how restricting car access to Madrid Central impacted Christmas shopping. From information gathered between December 1 2018 and January 7 2019, a comparison was made between data from the last two Christmases as well as the increased revenue in Madrid Central (Gran Vía and five subareas) vs. the increase in the entire city.

According to the report drawn up by council experts, 5.984 billion euros were spent across the city. The sample shows a 3.3% increase in spending in Madrid when compared to the same time the previous year; this goes up to 9.5% in Gran Vía and reaches 8.6% in the central area….(More)”.

How data collected from mobile phones can help electricity planning


Article by Eduardo Alejandro Martínez Ceseña, Joseph Mutale, Mathaios Panteli, and Pierluigi Mancarella in The Conversation: “Access to reliable and affordable electricity brings many benefits. It supports the growth of small businesses, allows students to study at night and protects health by offering an alternative cooking fuel to coal or wood.

Great efforts have been made to increase electrification in Africa, but rates remain low. In sub-Saharan Africa only 42% of urban areas have access to electricity, just 22% in rural areas.

This is mainly because there’s not enough sustained investment in electricity infrastructure, many systems can’t reliably support energy consumption or the price of electricity is too high.

Innovation is often seen as the way forward. For instance, cheaper and cleaner technologies, like solar storage systems deployed through mini grids, can offer a more affordable and reliable option. But, on their own, these solutions aren’t enough.

To design the best systems, planners must know where on- or off-grid systems should be placed, how big they need to be and what type of energy should be used for the most effective impact.

The problem is reliable data – like village size and energy demand – needed for rural energy planning is scarce or non-existent. Some can be estimated from records of human activities – like farming or access to schools and hospitals – which can show energy needs. But many developing countries have to rely on human activity data from incomplete and poorly maintained national census. This leads to inefficient planning.

In our research we found that data from mobile phones offer a solution. They provide a new source of information about what people are doing and where they’re located.

In sub-Saharan Africa, there are more people with mobile phones than access to electricity, as people are willing to commute to get a signal and/or charge their phones.

This means that there’s an abundance of data – that’s constantly updated and available even in areas that haven’t been electrified – that could be used to optimise electrification planning….

We were able to use mobile data to develop a countrywide electrification strategy for Senegal. Although Senegal has one of the highest access to electricity rates in sub-Saharan Africa, just 38% of people in rural areas have access.

By using mobile data we were able to identify the approximate size of rural villages and access to education and health facilities. This information was then used to size and cost different electrification options and select the most economic one for each zone – whether villages should be connected to the grids, or where off-grid systems – like solar battery systems – were a better option.

To collect the data we randomly selected mobile phone data from 450,000 users from Senegal’s main telecomms provider, Sonatel, to understand exactly how information from mobile phones could be used. This includes the location of user and the characteristics of the place they live….(More)”

Data Trusts as an AI Governance Mechanism


Paper by Chris Reed and Irene YH Ng: “This paper is a response to the Singapore Personal Data Protection Commission consultation on a draft AI Governance Framework. It analyses the five data trust models proposed by the UK Open Data Institute and identifies that only the contractual and corporate models are likely to be legally suitable for achieving the aims of a data trust.

The paper further explains how data trusts might be used as in the governance of AI, and investigates the barriers which Singapore’s data protection law presents to the use of data trusts and how those barriers might be overcome. Its conclusion is that a mixed contractual/corporate model, with an element of regulatory oversight and audit to ensure consumer confidence that data is being used appropriately, could produce a useful AI governance tool…(More)”.

Democracy vs. Disinformation


Ana Palacio at Project Syndicate: “These are difficult days for liberal democracy. But of all the threats that have arisen in recent years – populism, nationalism, illiberalism – one stands out as a key enabler of the rest: the proliferation and weaponization of disinformation.

The threat is not a new one. Governments, lobby groups, and other interests have long relied on disinformation as a tool of manipulation and control.

What is new is the ease with which disinformation can be produced and disseminated. Advances in technology allow for the increasingly seamless manipulation or fabrication of video and audio, while the pervasiveness of social media enables false information to be rapidly amplified among receptive audiences.

Beyond introducing falsehoods into public discourse, the spread of disinformation can undermine the possibility of discourse itself, by calling into question actual facts. This “truth decay” – apparent in the widespread rejection of experts and expertise – undermines the functioning of democratic systems, which depend on the electorate’s ability to make informed decisions about, say, climate policy or the prevention of communicable diseases.

The West has been slow to recognize the scale of this threat. It was only after the 2016 Brexit referendum and US presidential election that the power of disinformation to reshape politics began to attract attention. That recognition was reinforced in 2017, during the French presidential election and the illegal referendum on Catalan independence.

Now, systematic efforts to fight disinformation are underway. So far, the focus has been on tactical approaches, targeting the “supply side” of the problem: unmasking Russia-linked fake accounts, blocking disreputable sources, and adjusting algorithms to limit public exposure to false and misleading news. Europe has led the way in developing policy responses, such as soft guidelines for industry, national legislation, and strategic communications.

Such tactical actions – which can be implemented relatively easily and bring tangible results quickly – are a good start. But they are not nearly enough.

To some extent, Europe seems to recognize this. Early this month, the Atlantic Council organized #DisinfoWeek Europe, a series of strategic dialogues focused on the global challenge of disinformation. And more ambitious plans are already in the works, including French President Emmanuel Macron’s recently proposed European Agency for the Protection of Democracies, which would counter hostile manipulation campaigns.

But, as is so often the case in Europe, the gap between word and deed is vast, and it remains to be seen how all of this will be implemented and scaled up. In any case, even if such initiatives do get off the ground, they will not succeed unless they are accompanied by efforts that tackle the demand side of the problem: the factors that make liberal democratic societies today so susceptible to manipulation….(More)”.

When Patients Become Innovators


Article by Harold DeMonaco, Pedro Oliveira, Andrew Torrance, Christiana von Hippel, and Eric von Hippel: “Patients are increasingly able to conceive and develop sophisticated medical devices and services to meet their own needs — often without any help from companies that produce or sell medical products. This “free” patient-driven innovation process enables them to benefit from important advances that are not commercially available. Patient innovation also can provide benefits to companies that produce and sell medical devices and services. For them, patient do-it-yourself efforts can be free R&D that informs and amplifies in-house development efforts.

In this article, we will look at two examples of free innovation in the medical field — one for managing type 1 diabetes and the other for managing Crohn’s disease. We will set these cases within the context of the broader free innovation movement that has been gaining momentum in an array of industries1 and apply the general lessons of free innovation to the specific circumstances of medical innovation by patients….

What is striking about both of these cases is that neither commercial medical producers nor the clinical care system offered a solution that these patients urgently needed. Motivated patients stepped forward to develop solutions for themselves, entirely without commercial support.4

Free innovation in the medical field follows the general pattern seen in many other areas, including crafts, sporting goods, home and garden equipment, pet products, and apparel.5 Enabled by technology, social media, and a keen desire to find solutions aligned with their own needs, consumers of all kinds are designing new products for themselves….(More)”


Visualizing where rich and poor people really cross paths—or don’t


Ben Paynter at Fast Company: “…It’s an idea that’s hard to visualize unless you can see it on a map. So MIT Media Lab collaborated with the location intelligence firm Cuebiqto build one. The result is called the Atlas of Inequality and harvests the anonymized location data from 150,000 people who opted in to Cuebiq’s Data For Good Initiative to track their movement for scientific research purposes. After isolating the general area (based on downtime) where each subject lived, MIT Media Lab could estimate what income bracket they occupied. The group then used data from a six-month period between late 2016 and early 2017 to figure out where these people traveled, and how their paths overlapped.

[Screenshot: Atlas of Inequality]

The result is an interactive view of just how filtered, sheltered, or sequestered many people’s lives really are. That’s an important thing to be reminded of at a time when the U.S. feels increasingly ideologically and economically divided. “Economic inequality isn’t just limited to neighborhoods, it’s part of the places you visit every day,” the researchers say in a mission statement about the Atlas….(More)”.

Public Interest Technology University Network


About: “The Public Interest Technology Universities Network is a partnership that fosters collaboration between 21 universities and colleges committed to building the nascent field of public interest technology and growing a new generation of civic-minded technologists. Through the development of curricula, research agendas, and experiential learning programs in the public interest technology space, these universities are trying innovative tactics to produce graduates with multiple fluencies at the intersection of technology and policy. By joining PIT-UN, members commit to field building on campus. Members may choose to focus on some or all of these elements, in addition to other initiatives they deem relevant to establishing public interest technology on campus:

  1. Support curriculum and faculty development to enable interdisciplinary and cross-disciplinary education of students, so they can critically assess the ethical, political, and societal implications of new technologies, and design technologies in service of the public good.
  2. Develop experiential learning opportunities such as clinics, fellowships, apprenticeships, and internship, with public and private sector partners in the public interest technology space.
  3. Find ways to support graduates who pursue careers working in public interest technology, recognizing that financial considerations may make careers in this area unaffordable to many.
  4. Create mechanisms for faculty to receive recognition for the research, curriculum development, teaching, and service work needed to build public interest technology as an arena of inquiry.
  5. Provide institutional data that will allow us to measure the effectiveness of our interventions in helping to develop the field of public interest technology….(More)”.