future of work

The Precision Medicine Initiative: Data-Driven Treatments as Unique as Your Own Body

Curated on February 1, 2015August 3, 2018 by Stefaan Verhulst

White House Press Release: “…the Precision Medicine Initiative will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.

Most medical treatments have been designed for the “average patient.” As a result of this “one-size-fits-all-approach,” treatments can be very successful for some patients but not for others. This is changing with the emergence of precision medicine, an innovative approach to disease prevention and treatment that takes into account individual differences in people’s genes, environments, and lifestyles. Precision medicine gives clinicians tools to better understand the complex mechanisms underlying a patient’s health, disease, or condition, and to better predict which treatments will be most effective….

Objectives of the Precision Medicine Initiative:

More and better treatments for cancer: NCI will accelerate the design and testing of effective, tailored treatments for cancer by expanding genetically based clinical cancer trials, exploring fundamental aspects of cancer biology, and establishing a national “cancer knowledge network” that will generate and share new knowledge to fuel scientific discovery and guide treatment decisions.
Creation of a voluntary national research cohort: NIH, in collaboration with other agencies and stakeholders, will launch a national, patient-powered research cohort of one million or more Americans who volunteer to participate in research. Participants will be involved in the design of the Initiative and will have the opportunity to contribute diverse sources of data—including medical records; profiles of the patient’s genes, metabolites (chemical makeup), and microorganisms in and on the body; environmental and lifestyle data; patient-generated information; and personal device and sensor data. Privacy will be rigorously protected. This ambitious project will leverage existing research and clinical networks and build on innovative research models that enable patients to be active participants and partners. The cohort will be broadly accessible to qualified researchers and will have the potential to inspire scientists from multiple disciplines to join the effort and apply their creative thinking to generate new insights. The ONC will develop interoperability standards and requirements to ensure secure data exchange with patients’ consent, to empower patients and clinicians and advance individual, community, and population health.
Commitment to protecting privacy: To ensure from the start that this Initiative adheres to rigorous privacy protections, the White House will launch a multi-stakeholder process with HHS and other Federal agencies to solicit input from patient groups, bioethicists, privacy, and civil liberties advocates, technologists, and other experts in order to identify and address any legal and technical issues related to the privacy and security of data in the context of precision medicine.
Regulatory modernization: The Initiative will include reviewing the current regulatory landscape to determine whether changes are needed to support the development of this new research and care model, including its critical privacy and participant protection framework. As part of this effort, the FDA will develop a new approach for evaluating Next Generation Sequencing technologies — tests that rapidly sequence large segments of a person’s DNA, or even their entire genome. The new approach will facilitate the generation of knowledge about which genetic changes are important to patient care and foster innovation in genetic sequencing technology, while ensuring that the tests are accurate and reliable.
Public-private partnerships: The Obama Administration will forge strong partnerships with existing research cohorts, patient groups, and the private sector to develop the infrastructure that will be needed to expand cancer genomics, and to launch a voluntary million-person cohort. The Administration will call on academic medical centers, researchers, foundations, privacy experts, medical ethicists, and medical product innovators to lay the foundation for this effort, including developing new approaches to patient participation and empowerment. The Administration will carefully consider and develop an approach to precision medicine, including appropriate regulatory frameworks, that ensures consumers have access to their own health data – and to the applications and services that can safely and accurately analyze it – so that in addition to treating disease, we can empower individuals and families to invest in and manage their health.”

(More).

Moneyball for Government

Curated on January 30, 2015August 3, 2018 by Stefaan Verhulst

New book edited by Peter Orszag and Jim Nussle: “A bipartisan group of current and former federal government leaders and advisors have written a new book, titled Moneyball for Government, which encourages government to change how it works so that data, evidence and evaluation drive policy and funding decisions.
The book includes jointly-written chapters by former Obama and George W. Bush administration Budget Directors Peter Orszag and Jim Nussle, U.S. Senators Kelly Ayotte (R-NH) and Mark Warner (D-VA), former Obama and George W. Bush domestic policy advisors Melody Barnes and John Bridgeland; and former spokesmen for the Mitt Romney and Hillary Clinton presidential campaigns Kevin Madden and Howard Wolfson. It also includes chapters from former Obama and George W. Bush economic advisors Gene Sperling and Glenn Hubbard, and Obama and George W. Bush policy experts Robert Gordon and Ron Haskins.
The book also features profiles of innovative government and nonprofit leaders and organizations across the country that are successfully leveraging data, evidence and evaluation to get better results.
This book is about changing the way government works. By shifting public resources toward solutions that are informed by the best possible data, evidence and evaluation about what works, our government can improve the lives of young people, their families and communities. By brining together leading thinkers from across the political spectrum and highlighting the good work underway across the country, this book makes the case for Moneyball for Government and shows that it’s possible.”

How Network Science Is Changing Our Understanding of Law

Curated on January 30, 2015October 10, 2018 by Stefaan Verhulst

Emerging Technology From the arXiv: “One of the more fascinating areas of science that has emerged in recent years is the study of networks and their application to everyday life. It turns out that many important properties of our world are governed by networks with very specific properties.
These networks are not random by any means. Instead, they are often connected in the now famous small world pattern in which any part of the network can be reached in a relatively small number of steps. These kinds of networks lie behind many natural phenomena such as earthquakes, epidemics and forest fires and are equally ubiquitous in social phenomena such as the spread of fashions, languages, and even wars.
So it should come as no surprise that the same kind of network should exist in the legal world. Today, Marios Koniaris and pals at the National Technical University of Athens in Greece show that the network of links between laws follows exactly the same pattern. They say their network approach provides a unique insight into the nature of the law, the way it has emerged and how changes may influence it in the future.
The work of Koniaris and co focuses entirely on the law associated with the European Union. They begin by pointing out that this legal network is different from many other types of networks in two important ways….
The network can also be using for visualizing the nature of the legal world. It reveals clusters and related connections and can help legislators determine the effect of proposed changes…..It also shows how network science is spreading to every corner of scientific and social research.
Ref: arxiv.org/abs/1501.05237 : Network Analysis In The Legal Domain: A Complex Model For European Union Legal Sources”

Big Data Now

Curated on January 27, 2015August 15, 2018 by Stefaan Verhulst

Timothy McGovern at Radar – O’Reilly: “In the four years we’ve been producing Big Data Now, our wrap-up of important developments in the big data field, we’ve seen tools and applications mature, multiply, and coalesce into new categories. This year’s free wrap-up of Radar coverage is organized around seven themes:

Cognitive augmentation: As data processing and data analytics become more accessible, jobs that can be automated will go away. But to be clear, there are still many tasks where the combination of humans and machines produce superior results.
Intelligence matters: Artificial intelligence is now playing a bigger and bigger role in everyone’s lives, from sorting our email to rerouting our morning commutes, from detecting fraud in financial markets to predicting dangerous chemical spills. The computing power and algorithmic building blocks to put AI to work have never been more accessible.
The convergence of cheap sensors, fast networks, and distributed computation: The amount of quantified data available is increasing exponentially — and aside from tools for centrally handling huge volumes of time-series data as it arrives, devices and software are getting smarter about placing their own data accurately in context, extrapolating without needing to ‘check in’ constantly.
Reproducing, managing, and maintaining data pipelines: The coordination of processes and personnel within organizations to gather, store, analyze, and make use of data.
The evolving, maturing marketplace of big data components: Open-source components like Spark, Kafka, Cassandra, and ElasticSearch are reducing the need for companies to build in-house proprietary systems. On the other hand, vendors are developing industry-specific suites and applications optimized for the unique needs and data sources in a field.
The value of applying techniques from design and social science: While data science knows human behavior in the aggregate, design works in the particular, where A/B testing won’t apply — you only get one shot to communicate your proposal to a CEO, for example. Similarly, social science enables extrapolation from sparse data. Both sets of tools enable you to ask the right questions, and scope your problems and solutions realistically.
The importance of building a data culture: An organization that is comfortable with gathering data, curious about its significance, and willing to act on its results will perform demonstrably better than one that doesn’t. These priorities must be shared throughout the business.
The perils of big data: From poor analysis (driven by false correlation or lack of domain expertise) to intrusiveness (privacy invasion, price profiling, self-fulfilling predictions), big data has negative potential.

Download our free snapshot of big data in 2014, and follow the story this year on Radar.”

Would Athenian-style democracy work in the UK today?

Curated on January 21, 2015August 3, 2018 by Stefaan Verhulst

Paul Cartledge at the BBC, in the context of BBC Democracy Day: “…The -kratia component of demo-kratia was derived from kratos, which meant unambiguously and unambivalently power or strength. Demos, the other component, meant “people” – but which people, precisely?
At one extreme it could be taken to mean all the people – that is, all the politically empowered people, the adult male citizenry as a whole. At the other ideological pole, it referred to only a section of the citizen people, the largest, namely the majority of poor citizens – those who had to work for a living and might be in greater or less penury.
Against these masses were counterposed the elite citizens – the (more or less) wealthy Few. For them, and it may well have been they who coined the word demokratia, the demos in the class sense meant the great unwashed, the stupid, ignorant, uneducated majority.
So, depending where you stood on the social spectrum, demokratia was either Abe Lincoln’s government of, by and for the people, or the dictatorship of the proletariat. This complicates, at least, any thought-experiment such as the one I’m about to conduct here.
However, what really stands in the way is a more symbolic than pragmatic objection – education, education, education.
For all that we have a formal and universally compulsory educational system, we are not educated either formally or informally to be citizens in the strong, active and participatory senses. The ancient Athenians lacked any sort of formal educational system whatsoever – though somehow or other most of them learned to read and write and count.
On the other hand, what they did possess in spades was an abundance of communal institutions, both formal and informal, both peaceful and warlike, both sacred and secular, whereby ideas of democratic citizenship could be disseminated, inculcated, internalised, and above all practised universally.
Annual, monthly and daily religious festivals. Annual drama festivals that were also themselves religious. Multiple experiences of direct participation in politics at both the local (village, parish, ward) and the “national” levels. And fighting as and for the Athenians both on land and at sea, against enemies both Greek and non-Greek (especially Persian).
Formal Athenian democratic politics, moreover, drew no such modern distinctions between the executive, legislative and judicial branches or functions of government as are enshrined in modern democratic constitutions. One ruled, as a democratic citizen, in all relevant branches equally. A trial for alleged impiety was properly speaking a political trial, as Socrates discovered to his cost.
In short, ancient Athenian democracy was very far from our liberal democracy. I don’t think I need to bang on about its conscientious exclusion of the female half of the citizenry, or its basis in a radical form of dehumanised personal slavery.
So why should we even think of wanting to apply any lesson or precedent drawn from it to our democracy today or in the future? One very good reason is the so-called “democratic deficit”, the attenuation or etiolation of what it means to be, or function fully as, a democratic citizen….(More)”

New Evidence that Citizen Engagement Increases Tax Revenues

Curated on January 21, 2015August 3, 2018 by Stefaan Verhulst

Tiago Peixoto at DemocracySpot: “…A new working paper published by Diether Beuermann and Maria Amelina present the results of a randomized experiment in Russia, described in the abstract below:

This paper provides the first experimental evaluation of the participatory budgeting model showing that it increased public participation in the process of public decision making, increased local tax revenues collection, channeled larger fractions of public budgets to services stated as top priorities by citizens, and increased satisfaction levels with public services. These effects, however, were found only when the model was implemented in already-mature administratively and politically decentralized local governments. The findings highlight the importance of initial conditions with respect to the decentralization context for the success of participatory governance.

In my opinion, this paper is important for a number of reasons, some of which are worth highlighting here. First, it adds substantive support to the evidence on the positive relationship between citizen engagement and tax revenues. Second, in contrast to studies suggesting that participatory innovations are most likely to work when they are “organic”, or “bottom-up”, this paper shows how external actors can induce the implementation of successful participatory experiences. Third, I could not help but notice that two commonplace explanations for the success of citizen engagement initiatives, “strong civil society” and “political will”, do not feature in the study as prominent success factors. Last, but not least, the paper draws attention to how institutional settings matter (i.e. decentralization). Here, the jack-of-all-trades (yet not very useful) “context matters”, could easily be replaced by “institutions matter”….(More). You can read the full paper here [PDF].”

Empowering Users through Design

Curated on January 19, 2015October 10, 2018 by Stefaan Verhulst

New Book edited by David Bihanic: “At the crossroads of various disciplines, this collective work examines the possibility of a new end-user “engagement” in ongoing digital/technological products and services development. It provides an overview of recent research specifically focused on the user’s democratic participation and empowerment. It also enables readers to better identify the main opportunities of participatory design, a concept which encourages the blurring of the role between user and designer. This allows people to escape their status as “end-user” and to elevate themselves to the level of creator.
This book explores new avenues for rethinking the processes and practices of corporate innovation in order to cope with current socio-economic and technological changes. In so doing, it aims to help companies renew industrial models that allow them to design and produce new ranges of technological products and services by giving the user an active role in the development process, far beyond the basic role of consumer.
Intended for designers, design researchers and scientists interested in innovation and technology management, this book also provides a valuable resource for professionals involved in technology-based innovation processes….(More).”

Interactive platform celebrates the work of unpaid caregivers

Curated on January 14, 2015August 15, 2018 by Stefaan Verhulst

Springwise.com: “Careticker is a mobile app which could record the invaluable actions of millions of unpaid caregivers who look after older relatives at home — helping to keep them independent. Founder Chiara Bell decided that the input of this invisible workforce had gone unacknowledged for too long and created the mobile platform – currently in beta — to highlight the economic value of voluntary caregiving, and reward users with redeemable incentives.
The activities of volunteer caregivers, which would cost billions of dollars in a care-home or hospital, significantly reduce potential pay-out costs for health insurance companies — and Bell thinks they should share in the savings. She currently has two healthcare insurers on board providing rewards during the beta stage.
To begin, caregivers download the platform onto their iPhone or android and record tasks they undertake, tagging them into categories — which include bathing, wound-care and transportation. Each of the tasks earns points which translate into items such as a Wal-Mart gift card. The platform encourages interaction between caregivers enabling the sharing of advice and undoubtedly a sense of validation for their efforts.
Springwise recently reported on Lift Hero — a peer-to-peer lift service that uses medical professionals to drive the elderly to their destination….(More).”