“Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

Curated on Posted on by Stefaan Verhulst

Paper by Jessica Stockdale, Jackie Cassell and Elizabeth Ford: “The use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK, and technological innovation in analytical methods for new discoveries using these data resources is developing quickly. Data scientists have developed, and are improving, many ways to extract and process information in medical records. This continues to lead to an exciting range of health related discoveries, improving population health and saving lives. Nevertheless, as the development of analytic technologies accelerates, the decision-making and governance environment as well as public views and understanding about this work, has been lagging behind1.

Public opinion and data use

A range of small studies canvassing patient views, mainly in the USA, have found an overall positive orientation to the use of patient data for societal benefit2–7. However, recent case studies, like NHS England’s ill-fated Care.data scheme, indicate that certain schemes for secondary data use can prove unpopular in the UK. Launched in 2013, Care.data aimed to extract and upload the whole population’s general practice patient records to a central database for prevalence studies and service planning8. Despite the stated intention of Care.data to “make major advances in quality and patient safety”8, this programme was met with a widely reported public outcry leading to its suspension and eventual closure in 2016. Several factors may have been involved in this failure, from the poor public communication about the project, lack of social licence9, or as pressure group MedConfidential suggests, dislike of selling data to profit-making companies10. However, beyond these specific explanations for the project’s failure, what ignited public controversy was a concern with the impact that its aim to collect and share data on a large scale might have on patient privacy. The case of Care.data indicates a reluctance on behalf of the public to share their patient data, and it is still not wholly clear whether the public are willing to accept future attempts at extracting and linking large datasets of medical information. The picture of mixed opinion makes taking an evidence-based position, drawing on social consensus, difficult for legislators, regulators, and data custodians who may respond to personal or media generated perceptions of public views. However, despite differing results of studies canvassing public views, we hypothesise that there may be underlying ethical principles that could be extracted from the literature on public views, which may provide guidance to policy-makers for future data-sharing….(More)”.

This Startup Is Challenging Google Maps—and It Needs You

Curated on Posted on by Stefaan Verhulst

Aarian Marshall at Wired: “A whole lifetime in New York City, and Christiana Ting didn’t realize just how many urgent care facilities there were until the app told her to start looking for them. “They were giving extra points for medical offices, and I found them, I think, on every block,” she says. “I’m not sure what that says about the neighborhood where I work.”

Ting was one of 761 New Yorkers who downloaded, played with, and occasionally became obsessed with an app called MapNYC this fall, vying for their share of an 8-bitcoin prize (worth about $50,000 at the time). The month-long contest, run by a new mapping startup called StreetCred, was really an experiment. StreetCred’s main research question: How do you convince regular people to build and verify mappingdata?

It turns out that the maps that guide you to the nearest Arby’s, or help your Lyft driver find your house, don’t just materialize. “I took mapping for granted until I started the competition,” Ting says, even though she pulls up Google Maps at least twice a day. “But it’s such an inconvenience if the info on the map is wrong, especially in a place like New York, that’s changing all the time.”

For regular folk, detailed, reliable mapping info is helpful. For businesses, it can be crucial. Some want to be found when a map user searches for the nearest sandwich shop. Others use products that rely on base maps—think Uber, the Weather Channel, your car’s navigation system—and require up-to-date location data. “One of the huge challenges to any geographic database is its currency,” says Renee Sieber, a geographer who studies participatory mapping at McGill University. That is to say, yesterday’s map is no good to anybody doing business today.

StreetCred sees that as an opportunity. “There’s a lot of companies, none of whom I can name, who have location data, and that data needs improvement,” says Randy Meech, CEO of the small startup. (Meech’s last open-source mapping company, a Samsung subsidiary called Mapzen, shut down in January.) Maybe a client found a data set online or purchased one from another company. Either way, it’s static, and that means it’s only a matter of time before it fails to represent reality.

Google Maps, the giant in this space, has created its extensive database through years of web scraping, Streetview roaming, purchasing and collecting satellite data, and both paying and asking volunteers to verify that the businesses it identifies are still in the same place. But the company doesn’t provide all of its specific location or “point of interest” data to developers—where that Thai restaurant is, or where the hiking trail starts, or where the hospital parking lot is located. When it and other mapping services like HERE Technologies, TomTom, and Foursquare do offer that intel, it can be pricey. StreetCred wants to make that info free for customers who don’t need that much data and cheaper for those that do….(More)”.

The Urban Commons: How Data and Technology Can Rebuild Our Communities

Curated on Posted on by Stefaan Verhulst

Book by Daniel T. O’Brien: “The future of smart cities has arrived, courtesy of citizens and their phones. To prove it, Daniel T. O’Brien explains the transformative insights gleaned from years researching Boston’s 311 reporting system, a sophisticated city management tool that has revolutionized how ordinary Bostonians use and maintain public spaces. Through its phone service, mobile app, website, and Twitter account, 311 catalogues complaints about potholes, broken street lights, graffiti, litter, vandalism, and other issues that are no one citizen’s responsibility but affect everyone’s quality of life. The Urban Commons offers a pioneering model of what modern digital data and technology can do for cities like Boston that seek both prosperous growth and sustainability.

Analyzing a rich trove of data, O’Brien discovers why certain neighborhoods embrace the idea of custodianship and willingly invest their time to monitor the city’s common environments and infrastructure. On the government’s side of the equation, he identifies best practices for implementing civic technologies that engage citizens, for deploying public services in collaborative ways, and for utilizing the data generated by these efforts.

Boston’s 311 system has narrowed the gap between residents and their communities, and between constituents and local leaders. The result, O’Brien shows, has been the creation of more effective policy and practices that reinvigorate the way citizens and city governments approach their mutual interests. By unpacking when, why, and how the 311 system has worked for Boston, The Urban Commons reveals the power and potential of this innovative system, and the lessons learned that other cities can adapt…(More)”.

The 2019 Edelman Trust Barometer

Curated on Posted on by Stefaan Verhulst

Press Release: “The 2019 Edelman Trust Barometer reveals that trust has changed profoundly in the past year—people have shifted their trust to the relationships within their control, most notably their employers. Globally, 75 percent of people trust “my employer” to do what is right, significantly more than NGOs (57 percent), business (56 percent) and media (47 percent).

Divided by Trust

There is a 16-point gap between the more trusting informed public and the far-more-skeptical mass population, marking a return to record highs of trust inequality. The phenomenon fueling this divide was a pronounced rise in trust among the informed public. Markets such as the U.S., UK, Canada, South Korea and Hong Kong saw trust gains of 12 points or more among the informed public. In 18 markets, there is now a double-digit trust gap between the informed public and the mass population.

2019 Edelman Trust Barometer - Trust Inequality

An Urgent Desire for Change

Despite the divergence in trust between the informed public and mass population the world is united on one front—all share an urgent desire for change. Only one in five feels that the system is working for them, with nearly half of the mass population believing that the system is failing them.

In conjunction with pessimism and worry, there is a growing move toward engagement and action. In 2019, engagement with the news surged by 22 points; 40 percent not only consume news once a week or more, but they also routinely amplify it. But people are encountering roadblocks in their quest for facts, with 73 percent worried about fake news being used as a weapon.

Trust Barometer - News Engagement

The New Employer-Employee Contract

Despite a high lack of faith in the system, there is one relationship that remains strong: “my employer.” Fifty-eight percent of general population employees say they look to their employer to be a trustworthy source of information about contentious societal issues.

Employees are ready and willing to trust their employers, but the trust must be earned through more than “business as usual.” Employees’ expectation that prospective employers will join them in taking action on societal issues (67 percent) is nearly as high as their expectations of personal empowerment (74 percent) and job opportunity (80 percent)….(More)”.

Inside the world’s ‘what works’ teams

Curated on Posted on by Stefaan Verhulst

Jen Gold at What Works Blog: “There’s a small but growing band of government teams around the world dedicated to making experiments happen. The Cabinet Office’s What Works Team, set up in 2013, was the first of its kind. But you’ll now find them in Canada, the US, Finland, Australia, Colombia, and the UAE.

All of these teams work across government to champion the testing and evaluation of new approaches to public service delivery. This blog takes a look at the many ways in which we’re striving to make experimentation the norm in our governments.

Unsurprisingly we’re all operating in very different contexts. Some teams were set up in response to central requirements for greater experimentation. Take Canada, for instance. In 2016 the Treasury Board directed departments and agencies to devote a fixed proportion of programme funds to “experimenting with new approaches” (building on Prime Minister Trudeau’s earlier instruction to Ministers). An Innovation and Experimentation Team was then set up in the Treasury Board to provide some central support.

Finland’s Experimentation Office, based in the Prime Minister’s Office, is in a similar position. The team supports the delivery of Prime Minister Juha Sipilä’s 2016 national action plan that calls for “a culture of experimentation” in public services and a series of flagship policy experiments.

Others, like the US Office of Evaluation Sciences (OES) and the Behavioural Economics Team of the Australian Government (BETA), grew out of political interest in using behavioural science experiments in public policy. But these teams now run experiments in a much broader set of areas.

What unites us is a focus on helping public servants generate and use new evidence in policy decisions and service delivery….(More)”.

Data Was Supposed to Fix the U.S. Education System. Here’s Why It Hasn’t.

Curated on Posted on by Stefaan Verhulst

Simon Rodberg at Harvard Business School: “For too long, the American education system failed too many kids, including far too many poor kids and kids of color, without enough public notice or accountability. To combat this, leaders of all political persuasions championed the use of testing to measure progress and drive better results. Measurement has become so common that in school districts from coast to coast you can now find calendars marked “Data Days,” when teachers are expected to spend time not on teaching, but on analyzing data like end-of-year and mid-year exams, interim assessments, science and social studies and teacher-created and computer-adaptive tests, surveys, attendance and behavior notes. It’s been this way for more than 30 years, and it’s time to try a different approach.

The big numbers are necessary, but the more they proliferate, the less value they add. Data-based answers lead to further data-based questions, testing, and analysis; and the psychology of leaders and policymakers means that the hunt for data gets in the way of actual learning. The drive for data responded to a real problem in education, but bad thinking about testing and data use has made the data cure worse than the disease….

The leadership decision at stake is how much data to collect. I’ve heard variations on “In God we trust; all others bring data” at any number of conferences and beginning-of-school-year speeches. But the mantra “we believe in data” is actually only shorthand for “we believe our actions should be informed by the best available data.” In education, that mostly means testing. In other fields, the kind of process is different, but the issue is the same. The key question is not, “will the data be useful?” (of course it can be) or, “will the data be interesting?” (Yes, again.) The proper question for leaders to ask is: will the data help us make better-enough decisions to be worth the cost of getting and using it? So far, the answer is “no.”

Nationwide data suggests that the growth of data-driven schooling hasn’t worked even by its own lights. Harvard professor Daniel Koretz says “The best estimate is that test-based accountability may have produced modest gains in elementary-school mathematics but no appreciable gains in either reading or high-school mathematics — even though reading and mathematics have been its primary focus.”

We wanted data to help us get past the problem of too many students learning too little, but it turns out that data is an insufficient, even misleading answer. It’s possible that all we’ve learned from our hyper-focus on data is that better instruction won’t come from more detailed information, but from changing what people do. That’s what data-driven reform is meant for, of course: convincing teachers of the need to change and focusing where they need to change….(More)”.

The Future of Civic Engagement

Curated on Posted on by Stefaan Verhulst

Report by Hollie Russon Gilman: “The 2018 mid-term voter turnout was the highest in 50 years. While vital, voting can’t sustain civic engagement in the long term. So, how do we channel near-term activism into long-term civic engagement?  In her essay, Gilman paints a picture of how new institutional structures, enabled by new technologies, could lead to a new “civic layer” in society that results in “a more responsive, participatory, collaborative, and adaptive future for civic engagement in governance decision making.”

Creating a New “Civic Layer.” The longer-term future presents an opportunity to set up institutionalized structures for engagement across local, state, and federal levels of government—creating a “civic layer.” Its precise form will evolve, but the basic concept is to establish a centralized interface within a com- munity to engage residents in governance decision making that interweaves digital and in-person engagement. People will earn “civic points” for engagement across a variety of activities—including every time they sign a petition, report a pot hole, or volunteer in their local community.

While creating a civic layer will require new institutional approaches, emerging technologies such as the Internet of Things (IoT), artificial intelligence (AI), and distributed ledger (e.g., blockchain) will also play a critical enabling role. These technologies will allow new institutional models to expand the concept of citizen coproduction of services in building a more responsive, connected, and engaged citizenry.

The following examples show different collaborative governance and technology components that will comprise the civic layer.  Each could be expanded and become interwoven into the fabric of civic life.

Use Collaborative Policymaking Models to Build a Civic Layer.  While we currently think of elections as a primary mode of citizen engagement with government, in the medium- to long-range future we could see collaborative policy models that become the de facto way people engage to supplement elections. Several of these engagement models are on the local level. However, with the formation of a civic layer these forms of engagement could become integrated into a federated structure enabling more scale, scope, and impact. Following are two promising models.

  • Participatory Budgeting can be broadly defined as the participation of citizens in the decision-making process of how to allocate their community’s budget among different priorities and in the monitoring of public spending. The process first came to the United States in 2009 through the work of the nonprofit Participatory Budgeting Project. Unlike traditional budget consultations held by some governments—which often amount to “selective listening” exercises—with participatory budgeting, citizens have an actual say in how a portion of a government’s investment budget is spent, with more money often allocated to poorer communities. Experts estimate that up to 2,500 local governments around the world have implemented participatory budgeting,
  • Citizens’Jury is another promising collaborative policymaking engagement model, pioneered in the 1980s and currently advocated by the nonprofit Jefferson Center in Minnesota. Three counties in rural Minnesota use this method as a foundation for Rural Climate Dialogues—regular gatherings where local residents hear from rural experts, work directly with their neighbors to design actionable community and policy recommendations, and share their feedback with public officials at a statewide meeting of rural Minnesota citizens, state agency representatives, and nonprofit organizations….(More)”.

The Internet of Bodies: A Convenient—and, Yes, Creepy—New Platform for Data Discovery

Curated on Posted on by Stefaan Verhulst

David Horrigan at ALM: “In the Era of the Internet of Things, we’ve become (at least somewhat) comfortable with our refrigerators knowing more about us than we know about ourselves and our Apple watches transmitting our every movement. The Internet of Things has even made it into the courtroom in cases such as the hot tub saga of Amazon Echo’s Alexa in State v. Bates and an unfortunate wife’s Fitbit in State v. Dabate.

But the Internet of Bodies?…

The Internet of Bodies refers to the legal and policy implications of using the human body as a technology platform,” said Northeastern University law professor Andrea Matwyshyn, who works also as co-director of Northeastern’s Center for Law, Innovation, and Creativity (CLIC).

“In brief, the Internet of Things (IoT) is moving onto and inside the human body, becoming the Internet of Bodies (IoB),” Matwyshyn added….


The Internet of Bodies is not merely a theoretical discussion of what might happen in the future. It’s happening already.

Former U.S. Vice President Dick Cheney revealed in 2013 that his physicians ordered the wireless capabilities of his heart implant disabled out of concern for potential assassin hackers, and in 2017, the U.S. Food and Drug Administration recalled almost half a million pacemakers over security issues requiring a firmware update.

It’s not just former vice presidents and heart patients becoming part of the Internet of Bodies. Northeastern’s Matwyshyn notes that so-called “smart pills” with sensors can report back health data from your stomach to smartphones, and a self-tuning brain implant is being tested to treat Alzheimer’s and Parkinson’s.

So, what’s not to like?

Better with Bacon?

“We are attaching everything to the Internet whether we need to or not,” Matwyshyn said, calling it the “Better with Bacon” problem, noting that—as bacon has become a popular condiment in restaurants—chefs are putting it on everything from drinks to cupcakes.

“It’s great if you love bacon, but not if you’re a vegetarian or if you just don’t like bacon. It’s not a bonus,” Matwyshyn added.

Matwyshyn’s bacon analogy raises interesting questions: Do we really need to connect everything to the Internet? Do the data privacy and data protection risks outweigh the benefits?

The Northeastern Law professor divides these IoB devices into three generations: 1) “body external” devices, such as Fitbits and Apple watches, 2) “body internal” devices, including Internet-connected pacemakers, cochlear implants, and digital pills, and 3) “body embedded” devices, hardwired technology where the human brain and external devices meld, where a human body has a real time connection to a remote machine with live updates.

Chip Party for Chipped Employees

A Wisconsin company, Three Square Market, made headlines in 2017—including an appearance on The Today Show—when the company microchipped its employees, not unlike what veterinarians do with the family pet. Not surprisingly, the company touted the benefits of implanting microchips under the skin of employees, including being able to wave one’s hand at a door instead of having to carry a badge or use a password….(More)”.

Smart cities could be lousy to live in if you have a disability

Curated on Posted on by Stefaan Verhulst

Elizabeth Woyke in MIT Technology Review: “People with disabilities affecting mobility, vision, hearing, and cognitive function often move to cities to take advantage of their comprehensive transit systems and social services. But US law doesn’t specify how municipalities should design and implement digital services for disabled people. As a result, cities sometimes adopt new technologies that can end up causing, rather than resolving, problems of accessibility.

Nowhere was this more evident than with New York City’s LinkNYC kiosks, which were installed on sidewalks in 2016 without including instructions in Braille or audible form. Shortly after they went in, the American Federation for the Blind sued the city. The suit was settled in 2017 and the kiosks have been updated, but Pineda says touch screens in general are still not fully accessible to people with disabilities.

Also problematic: the social-media-based apps that some municipal governments have started using to solicit feedback from residents. Blind and low-vision people typically can’t use the apps, and people over 65 are less likely to, says James Thurston, a vice president at the nonprofit G3ict, which promotes accessible information and communication technologies. “Cities may think they’re getting data from all their residents, but if those apps aren’t accessible, they’re leaving out the voices of large chunks of their population,” he says….

Even for city officials who have these issues on their minds, knowing where to begin can be difficult. Smart Cities for All, an initiative led by Thurston and Pineda, aims to help by providing free, downloadable tools that cities can use to analyze their technology and find more accessible options. One is a database of hundreds of pre-vetted products and services. Among the entries are Cyclomedia, which uses lidar data to determine when city sidewalks need maintenance, and ZenCity, a data analytics platform that uses AI to gauge what people are saying about a city’s level of accessibility. 

This month, the group will kick off a project working with officials in Chicago to grade the city on how well it supports people with disabilities. One key part of the project will be ensuring the accessibility of a new 311 phone system being introduced as a general portal to city services. The group has plans to expand to several other US cities this year, but its ultimate aim is to turn the work into a global movement. It’s met with governments in India and Brazil as well as Sidewalk Labs, the Alphabet subsidiary that is developing a smart neighborhood in Toronto….(More)”.

Los Angeles Accuses Weather Channel App of Covertly Mining User Data

Curated on Posted on by Stefaan Verhulst

Jennifer Valentino-DeVries and Natasha Singer in The New York Times: “The Weather Channel app deceptively collected, shared and profited from the location information of millions of American consumers, the city attorney of Los Angeles said in a lawsuit filed on Thursday.

One of the most popular online weather services in the United States, the Weather Channel app has been downloaded more than 100 million times and has 45 million active users monthly.

The government said the Weather Company, the business behind the app, unfairly manipulated users into turning on location tracking by implying that the information would be used only to localize weather reports. Yet the company, which is owned by IBM, also used the data for unrelated commercial purposes, like targeted marketing and analysis for hedge funds, according to the lawsuit…

In the complaint, the city attorney excoriated the Weather Company, saying it unfairly took advantage of its app’s popularity and the fact that consumers were likely to give their location data to get local weather alerts. The city said that the company failed to sufficiently disclose its data practices when it got users’ permission to track their location and that it obscured other tracking details in its privacy policy.

“These issues certainly aren’t limited to our state,” Mr. Feuer said. “Ideally this litigation will be the catalyst for other action — either litigation or legislative activity — to protect consumers’ ability to assure their private information remains just that, unless they speak clearly in advance.”…(More)”.