Using Personal Informatics Data in Collaboration among People with Different Expertise

Curated on Posted on by Stefaan Verhulst

Dissertation by Chia-Fang Chung: “Many people collect and analyze data about themselves to improve their health and wellbeing. With the prevalence of smartphones and wearable sensors, people are able to collect detailed and complex data about their everyday behaviors, such as diet, exercise, and sleep. This everyday behavioral data can support individual health goals, help manage health conditions, and complement traditional medical examinations conducted in clinical visits. However, people often need support to interpret this self-tracked data. For example, many people share their data with health experts, hoping to use this data to support more personalized diagnosis and recommendations as well as to receive emotional support. However, when attempting to use this data in collaborations, people and their health experts often struggle to make sense of the data. My dissertation examines how to support collaborations between individuals and health experts using personal informatics data.

My research builds an empirical understanding of individual and collaboration goals around using personal informatics data, current practices of using this data to support collaboration, and challenges and expectations for integrating the use of this data into clinical workflows. These understandings help designers and researchers advance the design of personal informatics systems as well as the theoretical understandings of patient-provider collaboration.

Based on my formative work, I propose design and theoretical considerations regarding interactions between individuals and health experts mediated by personal informatics data. System designers and personal informatics researchers need to consider collaborations occurred throughout the personal tracking process. Patient-provider collaboration might influence individual decisions to track and to review, and systems supporting this collaboration need to consider individual and collaborative goals as well as support communication around these goals. Designers and researchers should also attend to individual privacy needs when personal informatics data is shared and used across different healthcare contexts. With these design guidelines in mind, I design and develop Foodprint, a photo-based food diary and visualization system. I also conduct field evaluations to understand the use of lightweight data collection and integration to support collaboration around personal informatics data. Findings from these field deployments indicate that photo-based visualizations allow both participants and health experts to easily understand eating patterns relevant to individual health goals. Participants and health experts can then focus on individual health goals and questions, exchange knowledge to support individualized diagnoses and recommendations, and develop actionable and feasible plans to accommodate individual routines….(More)”.

Privacy concerns collide with the public interest in data

Curated on Posted on by Stefaan Verhulst

Gillian Tett in the Financial Times: “Late last year Statistics Canada — the agency that collects government figures — launched an innovation: it asked the country’s banks to supply “individual-level financial transactions data” for 500,000 customers to allow it to track economic trends. The agency argued this was designed to gather better figures for the public interest. However, it tipped the banks into a legal quandary. Under Canadian law (as in most western countries) companies are required to help StatsCan by supplying operating information. But data privacy laws in Canada also say that individual bank records are confidential. When the StatsCan request leaked out, it sparked an outcry — forcing the agency to freeze its plans. “It’s a mess,” a senior Canadian banker says, adding that the laws “seem contradictory”.

Corporate boards around the world should take note. In the past year, executive angst has exploded about the legal and reputational risks created when private customer data leak out, either by accident or in a cyber hack. Last year’s Facebook scandals have been a hot debating topic among chief executives at this week’s World Economic Forum in Davos, as has the EU’s General Data Protection Regulation. However, there is another important side to this Big Data debate: must companies provide private digital data to public bodies for statistical and policy purposes? Or to put it another way, it is time to widen the debate beyond emotive privacy issues to include the public interest and policy needs. The issue has received little public debate thus far, except in Canada. But it is becoming increasingly important.

Companies are sitting on a treasure trove of digital data that offers valuable real-time signals about economic activity. This information could be even more significant than existing statistics, because they struggle to capture how the economy is changing. Take Canada. StatsCan has hitherto tracked household consumption by following retail sales statistics, supplemented by telephone surveys. But consumers are becoming less willing to answer their phones, which undermines the accuracy of surveys, and consumption of digital services cannot be easily pursued. ...

But the biggest data collections sit inside private companies. Big groups know this, and some are trying to respond. Google has created its own measures to track inflation, which it makes publicly available. JPMorgan and other banks crunch customer data and publish reports about general economic and financial trends. Some tech groups are even starting to volunteer data to government bodies. LinkedIn has offered to provide anonymised data on education and employment to municipal and city bodies in America and beyond, to help them track local trends; the group says this is in the public interest for policy purposes, as “it offers a different perspective” than official data sources. But it is one thing for LinkedIn to offer anonymised data when customers have signed consent forms permitting the transfer of data; it is quite another for banks (or other companies) who have operated with strict privacy rules. If nothing else, the CanStat saga shows there urgently needs to be more public debate, and more clarity, around these rules. Consumer privacy issues matter (a lot). But as corporate data mountains grow, we will need to ask whether we want to live in a world where Amazon and Google — and Mastercard and JPMorgan — know more about economic trends than central banks or finance ministries. Personally, I would say “no”. But sooner or later politicians will need to decide on their priorities in this brave new Big Data world; the issue cannot be simply left to the half-hidden statisticians….(More)”.

Google’s Sidewalk Labs Plans to Package and Sell Location Data on Millions of Cellphones

Curated on Posted on by Stefaan Verhulst

Ava Kofman at the Intercept: “Most of the data collected by urban planners is messy, complex, and difficult to represent. It looks nothing like the smooth graphs and clean charts of city life in urban simulator games like “SimCity.” A new initiative from Sidewalk Labs, the city-building subsidiary of Google’s parent company Alphabet, has set out to change that.

The program, known as Replica, offers planning agencies the ability to model an entire city’s patterns of movement. Like “SimCity,” Replica’s “user-friendly” tool deploys statistical simulations to give a comprehensive view of how, when, and where people travel in urban areas. It’s an appealing prospect for planners making critical decisions about transportation and land use. In recent months, transportation authorities in Kansas City, Portland, and the Chicago area have signed up to glean its insights. The only catch: They’re not completely sure where the data is coming from.

Typical urban planners rely on processes like surveys and trip counters that are often time-consuming, labor-intensive, and outdated. Replica, instead, uses real-time mobile location data. As Nick Bowden of Sidewalk Labs has explained, “Replica provides a full set of baseline travel measures that are very difficult to gather and maintain today, including the total number of people on a highway or local street network, what mode they’re using (car, transit, bike, or foot), and their trip purpose (commuting to work, going shopping, heading to school).”

To make these measurements, the program gathers and de-identifies the location of cellphone users, which it obtains from unspecified third-party vendors. It then models this anonymized data in simulations — creating a synthetic population that faithfully replicates a city’s real-world patterns but that “obscures the real-world travel habits of individual people,” as Bowden told The Intercept.

The program comes at a time of growing unease with how tech companies use and share our personal data — and raises new questions about Google’s encroachment on the physical world….(More)”.

Survey: Majority of Americans Willing to Share Their Most Sensitive Personal Data

Curated on Posted on by Stefaan Verhulst

Center for Data Innovation: “Most Americans (58 percent) are willing to allow third parties to collect at least some sensitive personal data, according to a new survey from the Center for Data Innovation.

While many surveys measure public opinions on privacy, few ask consumers about their willingness to make tradeoffs, such as sharing certain personal information in exchange for services or benefits they want. In this survey, the Center asked respondents whether they would allow a mobile app to collect their biometrics or location data for purposes such as making it easier to sign into an account or getting free navigational help, and it asked whether they would allow medical researchers to collect sensitive data about their health if it would lead to medical cures for their families or others. Only one-third of respondents (33 percent) were unwilling to let mobile apps collect either their biometrics or location data under any of the described scenarios. And overall, nearly 6 in 10 respondents (58 percent) were willing to let a third party collect at least one piece of sensitive personal data, such as biometric, location, or medical data, in exchange for a service or benefit….(More)”.

Research Handbook on Human Rights and Digital Technology

Curated on Posted on by Stefaan Verhulst

Book edited by Ben Wagner, Matthias C. Kettemann and Kilian Vieth: “In a digitally connected world, the question of how to respect, protect and implement human rights has become unavoidable. This contemporary Research Handbook offers new insights into well-established debates by framing them in terms of human rights. It examines the issues posed by the management of key Internet resources, the governance of its architecture, the role of different stakeholders, the legitimacy of rule making and rule-enforcement, and the exercise of international public authority over users. Highly interdisciplinary, its contributions draw on law, political science, international relations and even computer science and science and technology studies…(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)”.

The Age of Surveillance Capitalism

Curated on Posted on by Stefaan Verhulst

Book by Shoshana Zuboff: “The challenges to humanity posed by the digital future, the first detailed examination of the unprecedented form of power called “surveillance capitalism,” and the quest by powerful corporations to predict and control our behavior.

Shoshana Zuboff’s interdisciplinary breadth and depth enable her to come to grips with the social, political, business, and technological meaning of the changes taking place in our time. We are at a critical juncture in the confrontation between the vast power of giant high-tech companies and government, the hidden economic logic of surveillance capitalism, and the propaganda of machine supremacy that threaten to shape and control human life. Will the brazen new methods of social engineering and behavior modification threaten individual autonomy and democratic rights and introduce extreme new forms of social inequality? Or will the promise of the digital age be one of individual empowerment and democratization?

The Age of Surveillance Capitalism is neither a hand-wringing narrative of danger and decline nor a digital fairy tale. Rather, it offers a deeply reasoned and evocative examination of the contests over the next chapter of capitalism that will decide the meaning of information civilization in the twenty-first century. The stark issue at hand is whether we will be the masters of information and machines or its slaves. …(More)”.

Your old tweets give away more location data than you think

Curated on Posted on by Stefaan Verhulst

Issie Lapowsky at Wired: “An international group of researchers has developed an algorithmic tool that uses Twitter to automatically predict exactly where you live in a matter of minutes, with more than 90 percent accuracy. It can also predict where you work, where you pray, and other information you might rather keep private, like, say, whether you’ve frequented a certain strip club or gone to rehab.

The tool, called LPAuditor (short for Location Privacy Auditor), exploits what the researchers call an “invasive policy” Twitter deployed after it introduced the ability to tag tweets with a location in 2009. For years, users who chose to geotag tweets with any location, even something as geographically broad as “New York City,” also automatically gave their precise GPS coordinates. Users wouldn’t see the coordinates displayed on Twitter. Nor would their followers. But the GPS information would still be included in the tweet’s metadata and accessible through Twitter’s API.

Twitter didn’t change this policy across its apps until April of 2015. Now, users must opt-in to share their precise location—and, according to a Twitter spokesperson, a very small percentage of people do. But the GPS data people shared before the update remains available through the API to this day.

The researchers developed LPAuditor to analyze those geotagged tweets and infer detailed information about people’s most sensitive locations. They outline this process in a new, peer-reviewed paper that will be presented at the Network and Distributed System Security Symposium next month. By analyzing clusters of coordinates, as well as timestamps on the tweets, LPAuditor was able to suss out where tens of thousands of people lived, worked, and spent their private time…(More)”.

Paying Users for Their Data Would Exacerbate Digital Inequality

Curated on Posted on by Stefaan Verhulst

Blog post by Eline Chivot: “Writing ever more complicated and intrusive regulations rules about data processing and data use has become the new fad in policymaking. Many are lending an ear to tempting yet ill-advised proposals to treat personal data as traditional finite resource. The latest example can be found in an article, A Blueprint for a Better Digital Society, by Glen Weyl, an economist at Microsoft Research, and Jaron Lanier, a computer scientist and writer. Not content with Internet users being able to access many online services like Bing and Twitter for free, they want online users to be paid in cash for the data they provide. To say that this proposal is flawed is an understatement. Its flawed for three main reasons: 1) consumers would lose significant shared value in exchange for minimal cash compensation; 2) higher incomes individuals would benefit at the expense of the poor; and 3) transaction costs would increase substantially, further reducing value for consumers and limiting opportunities for businesses to innovate with the data.

Weyl and Lanier’s argument is motivated by the belief that because Internet users are getting so many valuable services—like search, email, maps, and social networking—for free, they must be paying with their data. Therefore, they argue, if users are paying with their data, they should get something in return. Never mind that they do get something in return: valuable digital services that they do not pay for monetarily. But Weyl and Lanier say this is not enough, and consumers should get more.

While this idea may sound good on paper, in practice, it would be a disaster.

…Weyl and Lanier’s self-declared objective is to ensure digital dignity, but in practice this proposal would disrupt the equal treatment users receive from digital services today by valuing users based on their net worth. In this techno-socialist nirvana, to paraphrase Orwell, some pigs would be more equal than others. The French Data Protection Authority, CNIL, itself raised concerns about treating data as a commodity, warning that doing so would jeopardize society’s humanist values and fundamental rights which are, in essence, priceless.

To ensure “a better digital society,” companies should continue to be allowed to decide the best Internet business models based on what consumers demand. Data is neither cash nor a commodity, and pursuing policies based on this misconception will damage the digital economy and make the lives of digital consumers considerably worse….(More)”.

Digital rights as a security objective: New gateways for attacks

Curated on Posted on by Stefaan Verhulst

Yannic Blaschke at EDRI: “Violations of human rights online, most notably the right to data protection, can pose a real threat to electoral security and societal polarisation. In this series of blogposts, we’ll explain how and why digital rights must be treated as a security objective instead. The second part of the series explains how encroaching on digital rights could create new gateways for attacks against our security.

In the first part of this series, we analysed the failure of the Council of the European Union to connect the obvious dots between ePrivacy and disinformation online, leaving open a security vulnerability through a lack of protection of citizens. However, a failure to act is not the only front on which the EU is potentially weakening our security on- and offline: on the contrary, some of the EU’s more actively pursued digital policies could have unintended, yet serious consequences in the future. Nowhere is this trend more visible than in the recent trust in filtering algorithms, which seem to be the new “censorship machine” that is proposed as a solution for almost everything, from copyright infringements to terrorist content online.

Article 13 of the Copyright Directive proposal and the Terrorist Content Regulation proposal are two examples of the attempt to regulate the online world via algorithms. While having different motivations, both share the logic of outsourcing accountability and enforcement of public rules to private entities who will be the ones deciding about the availability of speech online. They, explicitly or implicitly, advocate for the introduction of technologies that detect and remove certain types of content: upload filters. They empower internet companies to decide which content will stay online, based on their terms of service (and not law). In a nutshell, public institutions are encouraging Google, Facebook and other platform giants to become the judge and the police of the internet. In turn, they undermine the presumption that it should be democratically legitimise states, not private entities, who are tasked with the heavy burden of balancing the right to freedom of expression.

Even more chilling is the outlook of upload filters creating new entry points for forces that seek to influence societal debates in their favour. If algorithms will be the judges of what can or cannot be published, they could become the target of the next wave of election interference campaigns, with attackers instigating them to take down critical or liberal voices to influence debates on the internet. Despite continuous warnings about the misuse of personal data on Facebook, it only took us a few years to arrive at the point of Cambridge Analytica. How long will it take us to arrive at a similar point of election interference through upload filters in online platforms?

If we let this pre-emptive and extra-judicial censorship happen, it would likely result in severe detriments to the freedom of speech and right to information of European citizens, and the free flow of information would, in consequence, be stifled. The societal effects of this could be further aggravated by the introduction of a press publishers right (Article 11 of the Copyright Directive) that is vividly opposed by the academic world, as it will concentrate the power over what appears in the news in ever fewer hands. Especially in Member States where media plurality and independence of bigger outlets from state authorities are no longer guaranteed, a decline in societal resilience to authoritarian tendencies is unfortunately easy to imagine.

We have to be very clear about what machines are good at and what they are bad at: Algorithms are incredibly well suited to detect patterns and trends, but cannot and will not be able perform the delicate act of balancing our rights and freedoms in accordance with the law any time soon….(More)”