Americans Want to Share Their Medical Data. So Why Can’t They?

Curated on Posted on by Stefaan Verhulst

Eleni Manis at RealClearHealth: “Americans are willing to share personal data — even sensitive medical data — to advance the common good. A recent Stanford University study found that 93 percent of medical trial participants in the United States are willing to share their medical data with university scientists and 82 percent are willing to share with scientists at for-profit companies. In contrast, less than a third are concerned that their data might be stolen or used for marketing purposes.

However, the majority of regulations surrounding medical data focus on individuals’ ability to restrict the use of their medical data, with scant attention paid to supporting the ability to share personal data for the common good. Policymakers can begin to right this balance by establishing a national medical data donor registry that lets individuals contribute their medical data to support research after their deaths. Doing so would help medical researchers pursue cures and improve health care outcomes for all Americans.

Increased medical data sharing facilitates advances in medical science in three key ways. First, de-identified participant-level data can be used to understand the results of trials, enabling researchers to better explicate the relationship between treatments and outcomes. Second, researchers can use shared data to verify studies and identify cases of data fraud and research misconduct in the medical community. For example, one researcher recently discovered a prolific Japanese anesthesiologist had falsified data for almost two decades. Third, shared data can be combined and supplemented to support new studies and discoveries.

Despite these benefits, researchers, research funders, and regulators have struggled to establish a norm for sharing clinical research data. In some cases, regulatory obstacles are to blame. HIPAA — the federal law regulating medical data — blocks some sharing on grounds of patient privacy, while federal and state regulations governing data sharing are inconsistent. Researchers themselves have a proprietary interest in data they produce, while academic researchers seeking to maximize publications may guard data jealously.

Though funding bodies are aware of this tension, they are unable to resolve it on their own. The National Institutes of Health, for example, requires a data sharing plan for big-ticket funding but recognizes that proprietary interests may make sharing impossible….(More)”.

#TrendingLaws: How can Machine Learning and Network Analysis help us identify the “influencers” of Constitutions?

Curated on Posted on by Stefaan Verhulst
Unicef: “New research by scientists from UNICEF’s Office of Innovation — published today in the journal Nature Human Behaviour — applies methods from network science and machine learning to constitutional law.  UNICEF Innovation Data Scientists Alex Rutherford and Manuel Garcia-Herranz collaborated with computer scientists and political scientists at MIT, George Washington University, and UC Merced to apply data analysis to the world’s constitutions over the last 300 years. This work sheds new light on how to better understand why countries’ laws change and incorporate social rights…

Data science techniques allow us to use methods like network science and machine learning to uncover patterns and insights that are hard for humans to see. Just as we can map influential users on Twitter — and patterns of relations between places to predict how diseases will spread — we can identify which countries have influenced each other in the past and what are the relations between legal provisions.

Why The Science of Constitutions?

One way UNICEF fulfills its mission is through advocacy with national governments — to enshrine rights for minorities, notably children, formally in law. Perhaps the most renowned example of this is the International Convention on the Rights of the Child (ICRC).

Constitutions, such as Mexico’s 1917 constitution — the first to limit the employment of children — are critical to formalizing rights for vulnerable populations. National constitutions describe the role of a country’s institutions, its character in the eyes of the world, as well as the rights of its citizens.

From a scientific standpoint, the work is an important first step in showing that network analysis and machine learning technique can be used to better understand the dynamics of caring for and protecting the rights of children — critical to the work we do in a complex and interconnected world. It shows the significant, and positive policy implications of using data science to uphold children’s rights.

What the Research Shows:

Through this research, we uncovered:

  • A network of relationships between countries and their constitutions.
  • A natural progression of laws — where fundamental rights are a necessary precursor to more specific rights for minorities.
  • The effect of key historical events in changing legal norms….(More)”.

The economic value of data: discussion paper

Curated on Posted on by Stefaan Verhulst

HM Treasury (UK): “Technological change has radically increased both the volume of data in the economy, and our ability to process it. This change presents an opportunity to transform our economy and society for the better.

Data-driven innovation holds the keys to addressing some of the most significant challenges confronting modern Britain, whether that is tackling congestion and improving air quality in our cities, developing ground-breaking diagnosis systems to support our NHS, or making our businesses more productive.

The UK’s strengths in cutting-edge research and the intangible economy make it well-placed to be a world leader, and estimates suggest that data-driven technologies will contribute over £60 billion per year to the UK economy by 2020.1 Recent events have raised public questions and concerns about the way that data, and particularly personal data, can be collected, processed, and shared with third party organisations.

These are concerns that this government takes seriously. The Data Protection Act 2018 updates the UK’s world-leading data protection framework to make it fit for the future, giving individuals strong new rights over how their data is used. Alongside maintaining a secure, trusted data environment, the government has an important role to play in laying the foundations for a flourishing data-driven economy.

This means pursuing policies that improve the flow of data through our economy, and ensure that those companies who want to innovate have appropriate access to high-quality and well-maintained data.

This discussion paper describes the economic opportunity presented by data-driven innovation, and highlights some of the key challenges that government will need to address, such as: providing clarity around ownership and control of data; maintaining a strong, trusted data protection framework; making effective use of public sector data; driving interoperability and standards; and enabling safe, legal and appropriate data sharing.

Over the last few years, the government has taken significant steps to strengthen the UK’s position as a world leader in data-driven innovation, including by agreeing the Artificial Intelligence Sector Deal, establishing the Geospatial Commission, and making substantial investments in digital skills. The government will build on those strong foundations over the coming months, including by commissioning an Expert Panel on Competition in Digital Markets. This Expert Panel will support the government’s wider review of competition law by considering how competition policy can better enable innovation and support consumers in the digital economy.

There are still big questions to be answered. This document marks the beginning of a wider set of conversations that government will be holding over the coming year, as we develop a new National Data Strategy….(More)”.

This surprising, everyday tool might hold the key to changing human behavior

Curated on Posted on by Stefaan Verhulst

Annabelle Timsit at Quartz: “To be a person in the modern world is to worry about your relationship with your phone. According to critics, smartphones are making us ill-mannered and sore-necked, dragging parents’ attention away from their kids, and destroying an entire generation.

But phones don’t have to be bad. With 4.68 billion people forecast to become mobile phone users by 2019, nonprofits and social science researchers are exploring new ways to turn our love of screens into a force for good. One increasingly popular option: Using texting to help change human behavior.

Texting: A unique tool

The short message service (SMS) was invented in the late 1980s, and the first text message was sent in 1992. (Engineer Neil Papworth sent “merry Christmas” to then-Vodafone director Richard Jarvis.) In the decades since, texting has emerged as the preferred communication method for many, and in particular younger generations. While that kind of habit-forming can be problematic—47% of US smartphone users say they “couldn’t live without” the device—our attachment to our phones also makes text-based programs a good way to encourage people to make better choices.

“Texting, because it’s anchored in mobile phones, has the ability to be with you all the time, and that gives us an enormous flexibility on precision,” says Todd Rose, director of the Mind, Brain, & Education Program at the Harvard Graduate School of Education. “When people lead busy lives, they need timely, targeted, actionable information.”

And who is busier than a parent? Text-based programs can help current or would-be moms and dads with everything from medication pickup to childhood development. Text4Baby, for example, messages pregnant women and young moms with health information and reminders about upcoming doctor visits. Vroom, an app for building babies’ brains, sends parents research-based prompts to help them build positive relationships with their children (for example, by suggesting they ask toddlers to describe how they’re feeling based on the weather). Muse, an AI-powered app, uses machine learning and big data to try and help parents raise creative, motivated, emotionally intelligent kids. As Jenny Anderson writes in Quartz: “There is ample evidence that we can modify parents’ behavior through technological nudges.”

Research suggests text-based programs may also be helpful in supporting young children’s academic and cognitive development. …Texts aren’t just being used to help out parents. Non-governmental organizations (NGOs) have also used them to encourage civic participation in kids and young adults. Open Progress, for example, has an all-volunteer community called “text troop” that messages young adults across the US, reminding them to register to vote and helping them find their polling location.

Text-based programs are also useful in the field of nutrition, where private companies and public-health organizations have embraced them as a way to give advice on healthy eating and weight loss. The National Cancer Institute runs a text-based program called SmokefreeTXT that sends US adults between three and five messages per day for up to eight weeks, to help them quit smoking.

Texting programs can be a good way to nudge people toward improving their mental health, too. Crisis Text Line, for example, was the first national 24/7 crisis-intervention hotline to conduct counseling conversations entirely over text…(More).

Regulation by Blockchain: The Emerging Battle for Supremacy between the Code of Law and Code as Law

Curated on Posted on by Stefaan Verhulst

Paper by Karen Yeung at Modern Law Review: “Many advocates of distributed ledger technologies (including blockchain) claim that these technologies provide the foundations for an organisational form that will enable individuals to transact with each other free from the travails of conventional law, thus offering the promise of grassroots democratic governance without the need for third party intermediaries. But does the assumption that blockchain systems will operate beyond the reach of conventional law withstand critical scrutiny?

This is the question which this paper investigates, by examining the intersection and interactions between conventional law promulgated and enforced by national legal systems (ie the ‘code of law’) and the internal rules of blockchain systems which take the form of executable software code and cryptographic algorithms via a distributed computing network (‘code as law’).

It identifies three ways in which the code of law may interact with code as law, based primarily on the intended motives and purposes of those engaged in activities in developing, maintaining or undertaking transactions upon the network, referring to the use of blockchain: (a) with the express intention of evading the substantive limits of the law (‘hostile evasion’); (b) to complement and/or supplement conventional law with the aim of streamlining or enhancing compliance with agreed standards (‘efficient alignment’); and (c) to co-ordinate the actions of multiple participants via blockchain to avoid the procedural inefficiencies and complexities associated with the legal process, including the transaction, monitoring and agency costs associated with conventional law (‘alleviating transactional friction’).

These different classes of case are likely to generate different dynamic interactions between the blockchain code and conventional legal systems, which I describe respectively as ‘cat and mouse’, the ‘joys of (patriarchial) marriage’ and ‘uneasy coexistence and mutual suspicion’ respectively…(More)”.

Open Science by Design: Realizing a Vision for 21st Century Research

Curated on Posted on by Stefaan Verhulst

Report by the National Academies of Sciences: “Openness and sharing of information are fundamental to the progress of science and to the effective functioning of the research enterprise. The advent of scientific journals in the 17th century helped power the Scientific Revolution by allowing researchers to communicate across time and space, using the technologies of that era to generate reliable knowledge more quickly and efficiently. Harnessing today’s stunning, ongoing advances in information technologies, the global research enterprise and its stakeholders are moving toward a new open science ecosystem. Open science aims to ensure the free availability and usability of scholarly publications, the data that result from scholarly research, and the methodologies, including code or algorithms, that were used to generate those data.

Open Science by Design is aimed at overcoming barriers and moving toward open science as the default approach across the research enterprise. This report explores specific examples of open science and discusses a range of challenges, focusing on stakeholder perspectives. It is meant to provide guidance to the research enterprise and its stakeholders as they build strategies for achieving open science and take the next steps….(More)”.

The CrowdLaw Catalog

Curated on Posted on by Stefaan Verhulst

The GovLab: “The CrowdLaw Catalog is a growing repository of 100 CrowdLaw cases from around the world. The goal of the catalog is to help those wishing to start new or improve existing CrowdLaw projects to learn from one another.

Examples are tagged and searchable by four criteria:

  1. Level – What level of government is involved? Search by National, Regional, and/or Local
  2. Stage – At what stage of the law or policymaking process the participation take place? Search by Problem Identification, Solution Identification, Drafting, Decision Making, Implementation and/or Assessment
  3. Task – What are people being asked to contribute? Search by: Ideas, Expertise, Opinions, Evidence and/or Actions.
  4. Technology – What is the platform? Search by: Web, Mobile and/or Offline

The catalog offers brief descriptions of each initiative and links to additional resources….(More)”.

Let’s make private data into a public good

Curated on Posted on by Stefaan Verhulst

Article by Mariana Mazzucato: “The internet giants depend on our data. A new relationship between us and them could deliver real value to society….We should ask how the value of these companies has been created, how that value has been measured, and who benefits from it. If we go by national accounts, the contribution of internet platforms to national income (as measured, for example, by GDP) is represented by the advertisement-related services they sell. But does that make sense? It’s not clear that ads really contribute to the national product, let alone to social well-being—which should be the aim of economic activity. Measuring the value of a company like Google or Facebook by the number of ads it sells is consistent with standard neoclassical economics, which interprets any market-based transaction as signaling the production of some kind of output—in other words, no matter what the thing is, as long as a price is received, it must be valuable. But in the case of these internet companies, that’s misleading: if online giants contribute to social well-being, they do it through the services they provide to users, not through the accompanying advertisements.

This way we have of ascribing value to what the internet giants produce is completely confusing, and it’s generating a paradoxical result: their advertising activities are counted as a net contribution to national income, while the more valuable services they provide to users are not.

Let’s not forget that a large part of the technology and necessary data was created by all of us, and should thus belong to all of us. The underlying infrastructure that all these companies rely on was created collectively (via the tax dollars that built the internet), and it also feeds off network effects that are produced collectively. There is indeed no reason why the public’s data should not be owned by a public repository that sells the data to the tech giants, rather than vice versa. But the key issue here is not just sending a portion of the profits from data back to citizens but also allowing them to shape the digital economy in a way that satisfies public needs. Using big data and AI to improve the services provided by the welfare state—from health care to social housing—is just one example.

Only by thinking about digital platforms as collective creations can we construct a new model that offers something of real value, driven by public purpose. We’re never far from a media story that stirs up a debate about the need to regulate tech companies, which creates a sense that there’s a war between their interests and those of national governments. We need to move beyond this narrative. The digital economy must be subject to the needs of all sides; it’s a partnership of equals where regulators should have the confidence to be market shapers and value creators….(More)”.

Is Open Data Working for Women in Africa?

Curated on Posted on by Stefaan Verhulst

Web Foundation: “Open data has the potential to change politics, economies and societies for the better by giving people more opportunities to engage in the decisions that affect their lives. But to reach the full potential of open data, it must be available to and used by all. Yet, across the globe — and in Africa in particular — there is a significant data gap.

This report — Is open data working for women in Africa — maps the current state of open data for women across Africa, with insights from country-specific research in Nigeria, Cameroon, Uganda and South Africa with additional data from a survey of experts in 12 countries across the continent.

Our findings show that, despite the potential for open data to empower people, it has so far changed little for women living in Africa.

Key findings

  • There is a closed data culture in Africa — Most countries lack an open culture and have legislation and processes that are not gender-responsive. Institutional resistance to disclosing data means few countries have open data policies and initiatives at the national level. In addition, gender equality legislation and policies are incomplete and failing to reduce gender inequalities. And overall, Africa lacks the cross-organisational collaboration needed to strengthen the open data movement.
  • There are barriers preventing women from using the data that is available — Cultural and social realities create additional challenges for women to engage with data and participate in the technology sector. 1GB of mobile data in Africa costs, on average, 10% of average monthly income. This high cost keeps women, who generally earn less than men, offline. Moreover, time poverty, the gender pay gap and unpaid labour create economic obstacles for women to engage with digital technology.
  • Key datasets to support the advocacy objectives of women’s groups are missing — Data on budget, health and crime are largely absent as open data. Nearly all datasets in sub-Saharan Africa (373 out of 375) are closed, and sex-disaggregated data, when available online, is often not published as open data. There are few open data policies to support opening up of key datasets and even when they do exist, they largely remain in draft form. With little investment in open data initiatives, good data management practices or for implementing Right To Information (RTI) reforms, improvement is unlikely.
  • There is no strong base of research on women’s access and use of open data — There is lack of funding, little collaboration and few open data champions. Women’s groups, digital rights groups and gender experts rarely collaborate on open data and gender issues. To overcome this barrier, multi-stakeholder collaborations are essential to develop effective solutions….(More)”.

Bad Governance and Corruption

Curated on Posted on by Stefaan Verhulst

Textbook by Richard Rose and Caryn Peiffer: “This book explains why the role of corruption varies greatly between public services, between people, between national systems of governance, and between measures of corruption.

More than 1.8 billion people pay the price of bad government each year, by sending a bribe to a public official.

In developing countries, corruption affects social services, such as health care and education, and law enforcement institutions, such as the police. When public officials do not act as bureaucrats delivering services by the book, people can try to get them by hook or by crook. The book’s analysis draws on unique evidence: a data base of sample surveys of 175,000 people in 125 countries in Africa, Asia, the Middle East, Europe, and North and South America. The authors avoid one-size-fits-all proposals for reform and instead provide measures that can be applied to particular public services to reduce or eliminate opportunities for corruption….(More)”.