Curated findings and actionable knowledge at the intersection of technology, innovation, and governance
We work with a set of 3000 posts to online health forums in breast cancer, morbus crohn and different allergies. Each sentence in a post is manually labeled as “experience”, “fact” or “opinion”. Using this data, we train a support vector machine algorithm to perform classification. The results are evaluated in a 10-fold cross validation procedure.
Overall, we find that it is possible to predict the type of information contained in a forum post with
Jeanette Beebe at Fast Company: “Every time you shuffle through a line at the pharmacy, every time you try to get comfortable in those awkward doctor’s office chairs, every time you scroll through the web while you’re put on hold with a question about your medical bill, take a second to think about the person ahead of you and behind you.
Chances are, at least one of you is being monitored by a third party like data analytics giant Optum, which is owned by UnitedHealth Group, Inc. Since 1993, it’s captured medical data—lab results, diagnoses, prescriptions, and more—from 150 million Americans. That’s almost half of the U.S. population.
“They’re the ones that are tapping the data. They’re in there. I can’t remove them from my own health insurance contracts. So I’m stuck. It’s just part of the system,” says Joel Winston, an attorney who specializes in privacy and data protection law.
Healthcare providers can legally sell their data to a now-dizzyingly vast spread of companies, who can use it to make decisions, from designing new drugs to pricing your insurance rates to developing highly targeted advertising.
It’s written in the fine print: You don’t own your medical records. Well, except if you live in New Hampshire. It’s the only state that mandates its residents own their medical data. In 21 states, the law explicitly says that healthcare providers own these records, not patients. In the rest of the country, it’s up in the air.
Every time you visit a doctor or a pharmacy, your record grows. The details can be colorful: Using sources like Milliman’s IntelliScript and ExamOne’s ScriptCheck, a fuller picture of you emerges. Your interactions with the health are system, your medical payments, your prescription drug purchase history. And the market for the data is surging.
Its buyers and sharers—pharma giants, insurers, credit reporting agencies, and other data-hungry companies or “fourth parties” (like Facebook)—say that these massive health data sets can improve healthcare delivery and fuel advances in so-called “precision medicine.”
Still, this glut of health data has raised alarms among privacy advocates, who say many consumers are in the dark about how much of their health-related info is being gathered and mined….
Gardner predicted that traditional health data systems—electronic health records and electronic medical records—are less than ideal, given the “rigidity of the vendors and the products” and the way our data is owned and secured. Don’t count on them being around much longer, she said, “beyond the next few years.”
The future, Gardner suggested, is a system that runs on blockchain, which she defined for the committee as “basically a secure, visible, irrefutable ledger of transactions and ownership.” Still, a recent analysis of over 150 white papers revealed most healthcare blockchain projects “fall somewhere between half-baked and overly optimistic.”
As larger companies like IBM sign on, the technology may be edging closer to reality. Last year, Proof Work outlined a HIPAA-compliant system that manages patients’ medical histories over time, from acute care in the hospital to preventative checkups. The goal is to give these records to patients on their
Darshana Narayanan at The Economist: “Current forms of democracy exclude most people from political decision-making. We elect representatives and participate in the occasional referendums, but we mainly remain on the outside. The result is that a handful of people in power dictate what ought to be collective decisions. What we have now is hardly a democracy, or at least, not a democracy that we should settle for.
To design a truer form of democracy—that is, fair representation and an outcome determined by a plurality—we might draw some lessons from the collective
Of course fish are not the same as humans. But that study does suggest a way of thinking about decision-making. Instead of limiting influence to experts and strongly motivated interest groups, we should actively work to broaden participation to ensure that we include people lacking strong preferences or prior knowledge of an issue. In other words, we need to go against the ingrained thinking that non-experts should be excluded from decision-making. Inclusivity might just improve our chances of reaching a real, democratic consensus.
How can our political institutions facilitate this? In my work over the past several years I have tried to apply findings from behavioural science into institutions and into code to create better systems of governance. In the course of my work, I have found some promising experiments taking place around the world that harness new digital tools. They point the way to how democracy can be practiced in the 21st century….(More)”.
Book by Matt Qvortrup: “Until recently, referendums were little used. After the Scottish independence and Brexit referendums, they have come to the fore as a mechanism with the potential to disrupt the status quo and radically change political direction. This book looks at the historical development of the referendum, its use in different jurisdictions, and the types of constitutional questions it seeks to address. Written in an engaging style, the book offers a clear, objective overview of this important political and constitutional tool….(More)”.
Report by OECD: “Many people in OECD countries believe public services and social benefits are inadequate and hard to reach. More than half say they do not receive their fair share of benefits given the taxes they pay, and two-thirds believe others get more than they deserve. Nearly three out of four people say they want their government to do more to protect their social and economic security.
These are among the findings of a new OECD survey, “Risks that Matter”, which asked over 22,000 people aged 18 to 70 years old in 21 countries about their worries and concerns and how well they think their government helps them tackle social and economic risks.
This nationally representative survey finds that falling ill and not being able to make ends meet are often at the top of people’s lists of immediate concerns. Making ends meet is a particularly common worry for those on low incomes and in countries that were hit hard by the financial crisis. Older people are most often worried about their health, while younger people are frequently concerned with securing adequate housing. When asked about the longer-term, across all countries, getting by in old age is the most commonly cited worry.
The survey reveals a dissatisfaction with current social policy. Only a minority are satisfied with access to services like health care, housing, and long-term care. Many believe the government would not be able to provide a proper safety net if they lost their income due to job loss, illness or old age. More than half think they would not be able to easily access public benefits if they needed them.
“This is a wake-up call for policy makers,” said OECD Secretary-General Angel Gurría. “OECD countries have some of the most advanced and generous social protection systems in the world. They spend, on average, more than one-fifth of their GDP on social policies. Yet, too many people feel they cannot count fully on their government when they need help. A better understanding of the factors driving this perception and why people feel they are struggling is essential to making social protection more effective and efficient. We must restore trust and confidence in government, and promote equality of opportunity.”
In every country surveyed except Canada, Denmark, Norway and the Netherlands, most people say that their government does not incorporate the views of people like them when designing social policy. In a number of countries, including Greece, Israel, Lithuania, Portugal and Slovenia, this share rises to more than two-thirds of respondents. This sense of not being part of the policy debate increases at higher levels of education and income, while feelings of injustice are stronger among those from high-income households.
Public perceptions of fairness are worrying. More than half of respondents say they do not receive their fair share of benefits given the taxes they pay, a share that rises to three quarters or more in Chile, Greece, Israel and Mexico. At the same time, people are calling for more help from government. In almost all countries, more than half of respondents say they want the government to do more for their economic and social security. This is especially the case for older respondents and those on low incomes.
Across countries, people are worried about financial security in old age, and most are willing to pay more to support public pension systems… (More)”.
Report by Roberto Mangabeira Unger, Isaac Stanley, Madeleine Gabriel, and Geoff Mulgan: “If economic eras are defined by their most advanced form of production, then we live in a knowledge economy – one where knowledge plays a decisive role in the organisation of production, distribution and consumption.
The era of Fordist mass production that preceded it transformed almost every part of the economy. But the knowledge economy hasn’t spread in the same way. Only some people and places are reaping the benefits.
This is a big problem: it contributes to inequality, stagnation and political alienation. And traditional policy solutions are not sufficient to tackle it. We can’t expect benefits simply to trickle down to the rest of the population, and redistribution alone will not solve the inequalities we are facing.
What’s the alternative? Nesta has been working with Roberto Mangabeira Unger to convene discussions with politicians, researchers, and activists from member countries of the Organisation for Economic Co-operation and Development, to explore policy options for an inclusive knowledge economy. This report presents the results of that collaboration.
We argue that an inclusive knowledge economy requires action to democratise the economy – widening access to capital and productive opportunity, transforming models of ownership, addressing new concentrations of power, and democratising the direction of innovation.
It demands that we establish a social inheritance by reforming education and social security.
And it requires us to create a high-energy democracy, promoting experimental government, and independent and empowered civil society.
This is a broad ranging agenda. In practice, it focuses on:
Study by Michael L. Barnett et al in JAMA: “Is a collective intelligence approach of pooling multiple clinician and medical student diagnoses associated with improvement in diagnostic accuracy in online, structured clinical cases?
Findings This cross-sectional study analyzing data from the Human Diagnosis Project found that, across a broad range of medical cases and common presenting symptoms, independent differential diagnoses of multiple physicians combined into a weighted list significantly outperformed diagnoses of individual physicians with groups as small as 2, and accuracy increased with larger groups up to 9 physicians. Groups of nonspecialists also significantly outperformed individual specialists solving cases matched to the individual specialist’s specialty….
Main Outcomes and Measures The primary outcome was diagnostic accuracy, assessed as a correct diagnosis in the top 3 ranked diagnoses for an individual; for groups, the top 3 diagnoses were a collective differential generated using a weighted combination of user diagnoses with a variety of approaches. A version of the McNemar test was used to account for clustering across repeated solvers to compare diagnostic accuracy.
Conclusions and Relevance A collective intelligence approach was associated with higher diagnostic accuracy compared with individuals, including individual specialists whose expertise matched the case diagnosis, across a range of medical cases. Given the few proven strategies to address misdiagnosis, this technique merits further study in clinical settings….(More)”.
Department of Commerce: “These are the real stories of the people that recently participated in the Census Bureau initiative called The Opportunity Project—a novel, collaborative effort between government agencies, technology companies, and nongovernment organizations to translate government open data into user-friendly tools that solve real world problems for families, communities, and businesses nationwide. On March 1, they came together to share their projects at The Opportunity Project’s Demo Day. Projects like theirs help veterans, aspiring technologists, and all Americans connect with the career and educational opportunities, like Bryan and Olivia did.
One barrier for many American students and workers is the lack of clear data to help match them with educational opportunities and jobs. Students want information on the best courses that lead to high paying and high demand jobs. Job seekers want to find the jobs that best match their skills, or where to find new skills that open up career development opportunities. Despite the increasing availability of big data and the long-standing, highly regarded federal statistical system, there remain significant data gaps about basic labor market questions.
The Opportunity Project brings government, communities, and companies like IBM, the veteran-led Shift.org, and Nepris together to create tools to answer simple questions related to education, employment, health, transportation, housing, and many other matters that are critical to helping Americans advance in their lives and careers….(More)”.
Press Release: “Nearly half of Canadian consumers would be willing to share significant personal information, such as location data and lifestyle information, with their bank and insurer in exchange for lower pricing on products and services, according to a new report from Accenture (NYSE: ACN).
Accenture’s global Financial Services Consumer Study, based on a survey of 47,000 consumers in 28 countries which included 2,000 Canadians, found that more than half of consumers would share that data for benefits including more-rapid loan approvals, discounts on gym memberships and personalized offers based on current location.
At the same time, however, Canadian consumers believe that privacy is paramount, with nearly three quarters (72 per cent) saying they are very cautious about the privacy of their personal data. In fact, data security breaches were the second-biggest concern for consumers, behind only increasing costs, when asked what would make them leave their bank or insurer.
“Canadian consumers are willing to sharing their personal data in instances where it makes their lives easier but remain cautious of exactly how their information is being used,” said Robert Vokes, managing director of financial services at Accenture in Canada. “With this in mind, banks and insurers need to deliver hyper-relevant and highly convenient experience in order to remain relevant, retain trust and win customer loyalty in a digital economy.”
Consumers globally showed strong support for personalized insurance premiums, with 64 per cent interested in receiving adjusted car insurance premiums based on safe driving and 52 per cent in exchange for life insurance premiums tied to a healthy lifestyle. Four in five consumers (79 per cent) would provide personal data, including income, location and lifestyle habits, to their insurer if they believe it would help reduce the possibility of injury or loss.
In banking, 81 per cent of consumers would be willing to share income, location and lifestyle habit data for rapid loan approval, and 76 per cent would do so to receive personalized offers based on their location, such as discounts from a retailer. Approximately two-fifths (42 per cent) of Canadian consumers specifically, want their bank to provide updates on how much money they have based on spending that month and 46 per cent want savings tips based on their spending habits.
Appetite for data sharing differs around the world
Appetite for sharing significant personal data with financial firms was highest in China, with 67 per cent of consumers there willing to share more data for personalized services. Half (50 per cent) of consumers in the U.S. said they were willing to share more data for personalized services, and in Europe — where the General Data Protection Regulation took effect in May — consumers were more skeptical. For instance, only 40 per cent of consumers in both the U.K. and Germany said they would be willing to share more data with banks and insurers in return for personalized services…(More)”,
Alex Pasternack in Fast Company: “In the face of all the data abuse, many of us have, quite reasonably, thrown up our hands. But privacy didn’t die. It’s just been beaten up, sold, obscured, diffused unevenly across society. What privacy is and why it matters increasingly depends upon who you are, your age, your income, gender, ethnicity, where you’re from, and where you live. To borrow William Gibson’s famous quote about the future and its unevenness and inequalities, privacy is alive—it’s just not evenly distributed. And while we don’t all care about it the same way—we’re even divided on what exactly privacy is—its harms are still real. Even when our own privacy isn’t violated, privacy violations can still hurt us.
Privacy is personal, from the creepy feeling that our phones are literally listening to the endless parade of data breaches that test our ability to care anymore. It’s the unsettling feeling of giving “consent” without knowing what that means, “agreeing” to contracts we didn’t read with companies we don’t really trust. (Forget about understanding all the details; researchers have shown that most privacy policies surpass the reading level of the average person.)
It’s the data about us that’s harvested, bought, sold, and traded by an obscure army of data brokers without our knowledge, feeding marketers, landlords, employers, immigration officials, insurance companies, debt collectors, as well as stalkers and who knows who else. It’s the body camera or the sports arena or the social network capturing your face for who knows what kind of analysis. Don’t think of personal data as just “data.” As it gets more detailed and more correlated, increasingly, our data is us.
And “privacy” isn’t just privacy. It’s also tied up with security, freedom, social justice, free speech, and free thought. Privacy harms aren’t only personal, but societal. It’s not just the multibillion-dollar industry that aims to nab you and nudge you, but the multibillion-dollar spyware industry that helps governments nab dissidents and send them to prison or worse. It’s the supposedly fair and transparent algorithms that aren’t, turning our personal data into risk scores that can help perpetuate race, class, and gender divides, often without our knowing it.
Privacy is about dark ads bought with dark money and the micro-targeting of voters by overseas propagandists or by political campaigns at home. That kind of influence isn’t just the promise of a shadowy Cambridge Analytica or state-run misinformation campaigns, but also the premise of modern-day digital ad campaigns. (Note that Facebook’s research division later hired one of the researchers behind the Cambridge app.) And as the micro-targeting gets more micro, the tech giants that deal in ads are only getting more macro….(More)”
(This story is part of The Privacy Divide, a series that explores the fault lines and disparities–economic, cultural, philosophical–that have developed around digital privacy and its impact on society.)