Protection of health-related data: new guidelines

Curated on Posted on by Stefaan Verhulst

Press Release: “The Council of Europe has issued a set of guidelines to its 47 member states urging them to ensure, in law and practice, that the processing of health-related data is done in full respect of human rights, notably the right to privacy and data protection.

With the development of new technological tools in the health sector the volume of health-related data processed has grown exponentially showing the need for guidance for health administrations and professionals.

In a Recommendation, applicable to both the public and private sectors, the Council of Europe´s Committee of Ministers, calls on governments to transmit these guidelines to health-care systems and to actors processing health-related data, in particular health-care professionals and data protection officers.

The recommendation contains a set of principles to protect health-related data incorporating the novelties introduced in the updated Council of Europe data protection convention, known as “Convention 108+”, opened for signature in October 2018.

The Committee of Ministers underlines that health-related data should be protected by appropriate security measures taking into account the latest technological developments, their sensitive nature and the assessment of potential risks. Protection measures should be incorporated by design to any information system which processes health-related data.

The recommendation contains guidance with regard to various issues including the legitimate basis for the data processing of health-care data – notably consent by the data subject -, data concerning unborn children, health-related genetic data, the sharing of health-related data by professionals and the storage of data.

The guidelines list a number of rights of data subjects, crucially the transparency of data processing. They also contain a number of principles that should be respected when data are processed for scientific research, when they are collected by mobile devices or when they are transferred across borders….(More)”.

Negotiating with the future: incorporating imaginary future generations into negotiations

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Paper by Yoshio Kamijo et al: “People to be born in the future have no direct
influence on current affairs. Given the disconnect between people who are currently living and those who will inherit the planet left for them, individuals who are currently alive tend to be more oriented toward the present, posing a fundamental problem related to sustainability.

In this study, we propose a new framework for reconciling the disconnect between the present and the future whereby some individuals in the current generation serve as an imaginary future generation that negotiates with individuals in the real-world present. Through a laboratory-controlled intergenerational sustainability dilemma game (ISDG), we show how the presence of negotiators for a future generation increases the benefits of future generations. More specifically, we found that when faced with members of an imaginary future generation, 60% of participants selected
an option that promoted sustainability. In contrast, when the imaginary future generation was not salient, only 28% of participants chose the sustainable option…(More)”.

Big Data in the U.S. Consumer Price Index: Experiences & Plans

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Paper by Crystal G. Konny, Brendan K. Williams, and David M. Friedman: “The Bureau of Labor Statistics (BLS) has generally relied on its own sample surveys to collect the price and expenditure information necessary to produce the Consumer Price Index (CPI). The burgeoning availability of big data has created a proliferation of information that could lead to methodological improvements and cost savings in the CPI. The BLS has undertaken several pilot projects in an attempt to supplement and/or replace its traditional field collection of price data with alternative sources. In addition to cost reductions, these projects have demonstrated the potential to expand sample size, reduce respondent burden, obtain transaction prices more consistently, and improve price index estimation by incorporating real-time expenditure information—a foundational component of price index theory that has not been practical until now. In CPI, we use the term alternative data to refer to any data not collected through traditional field collection procedures by CPI staff, including third party datasets, corporate data, and data collected through web scraping or retailer API’s. We review how the CPI program is adapting to work with alternative data, followed by discussion of the three main sources of alternative data under consideration by the CPI with a description of research and other steps taken to date for each source. We conclude with some words about future plans… (More)”.

The Dilemmas of Wonderland: Decisions in the Age of Innovation

Curated on Posted on by Stefaan Verhulst

Book by Yakov Ben-Haim: “Innovations create both opportunities and dilemmas. They provide new and supposedly better opportunities, but — because of their newness — they are often more uncertain and potentially worse than existing options. Recent inventions and discoveries include new drugs, new energy sources, new foods, new manufacturing technologies, new toys and new pedagogical methods, new weapon systems, new home appliances and many other discoveries and inventions.

Is it better to use or not to use a new and promising but unfamiliar and hence uncertain innovation? That dilemma faces just about everybody. The paradigm of the innovation dilemma characterizes many situations, even when a new technology is not actually involved. The dilemma arises from new attitudes, like individual responsibility for the global environment, or new social conceptions, like global allegiance and self-identity transcending nation-states. These dilemmas have far-reaching implications for individuals, organizations, and society at large as they make decisions in the age of innovation. The uncritical belief in outcome-optimization — “more is better, so most is best” — pervades decision-making in all domains, but is often irresponsible when facing the uncertainties of innovation. 

There is a great need for practical conceptual tools for understanding and managing the dilemmas of innovation. This book offers a new direction for a wide audience. It discusses examples from many fields, including e-reading, bipolar disorder and pregnancy, disruptive technology in industry, stock markets, agricultural productivity and world hunger, military hardware, military intelligence, biological conservation, on-line learning, and more….(More)”.

The global South is changing how knowledge is made, shared and used

Curated on Posted on by Stefaan Verhulst

Robert Morrell at The Conversation: “Globalisation and new technology have changed the ways that knowledge is made, disseminated and consumed. At the push of a button, one can find articles or sources from all over the world. Yet the global knowledge economy is still marked by its history.

The former colonial nations of the nineteenth and twentieth centuries – the rich countries of Europe and North America which are collectively called the global North (normally considered to include the West and the first world, the North contains a quarter of the world’s population but controls 80% of income earned) – are still central in the knowledge economy. But the story is not one simply of Northern dominance. A process of making knowledge in the South is underway.

European colonisers encountered many sophisticated and complex knowledge systems among the colonised. These had their own intellectual workforces, their own environmental, geographical, historical and medical sciences. They also had their own means of developing knowledge. Sometimes the colonisers tried to obliterate these knowledges.

In other instances colonisers appropriated local knowledge, for instance in agriculture, fisheries and mining. Sometimes they recognised and even honoured other knowledge systems and intellectuals. This was the case among some of the British in India, and was the early form of “Orientalism”, the study of people and cultures from the East.

In the past few decades, there’s been more critique of global knowledge inequalities and the global North’s dominance. There have also been shifts in knowledge production patterns; some newer disciplines have stepped away from old patterns of inequality.

These issues are examined in a new book, Knowledge and Global Power: Making new sciences in the South (published by Wits University Press), which I co-authored with Fran Collyer, Raewyn Connell and Joao Maia. The focus is especially on those areas where old patterns are not being replicated, so the study chooses climate change, gender and HIV and AIDS as three new areas of knowledge production in which new voices from the South might be prominent….(More)”.

OECD survey reveals many people unhappy with public services and benefits

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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)”.

Imagination unleashed: Democratising the knowledge economy

Curated on Posted on by Stefaan Verhulst

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.

Recommendations

This is a broad ranging agenda. In practice, it focuses on:

  • SMEs and their capacity and skills – greatly accelerating the adoption of new methods and technologies at every level of the economy, including new clean technologies that reduce carbon emissions
  • Transforming industrial policy to cope with the new concentrations of power and to prevent monopoly and predatory behaviours
  • Transforming and disaggregating property rights so that more people can have a stake in productive resources
  • Reforming education to prepare the next generation for the labour market of the future not the past – cultivating the mindsets, skills and cultures relevant to future jobs
  • Reforming social policy to respond to new patterns of work and need – creating more flexible systems that can cope with rapid change in jobs and skills, with a greater emphasis on reskilling
  • Reforming government and democracy to achieve new levels of participation, agility, experimentation and effectiveness…(More)”

New Data Tools Connect American Workers to Education and Job Opportunities

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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.

  • What is the payoff of a bachelor’s degree versus an apprenticeship, 2-year degree, industry certification, or other credential?
  • What are the jobs of the future?  Which jobs of today also will be the jobs of the future? What skills and experience do companies value most?

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)”.

Nearly Half of Canadian Consumers Willing to Share Significant Personal Data with Banks and Insurers in Exchange for Lower Pricing, Accenture Study Finds

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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).

Consumers willing to share personal data in select scenarios. (CNW Group/Accenture)
Consumers willing to share personal data in select scenarios. (CNW Group/Accenture)

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)”,

Privacy’s not dead. It’s just not evenly distributed

Curated on Posted on by Stefaan Verhulst

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.)