All European scientific articles to be freely accessible by 2020

Curated on Posted on by Stefaan Verhulst

EU Presidency: “All scientific articles in Europe must be freely accessible as of 2020. EU member states want to achieve optimal reuse of research data. They are also looking into a European visa for foreign start-up founders.

And, according to the new Innovation Principle, new European legislation must take account of its impact on innovation. These are the main outcomes of the meeting of the Competitiveness Council in Brussels on 27 May.

Sharing knowledge freely

Under the presidency of Netherlands State Secretary for Education, Culture and Science Sander Dekker, the EU ministers responsible for research and innovation decided unanimously to take these significant steps. Mr Dekker is pleased that these ambitions have been translated into clear agreements to maximise the impact of research. ‘Research and innovation generate economic growth and more jobs and provide solutions to societal challenges,’ the state secretary said. ‘And that means a stronger Europe. To achieve that, Europe must be as attractive as possible for researchers and start-ups to locate here and for companies to invest. That calls for knowledge to be freely shared. The time for talking about open access is now past. With these agreements, we are going to achieve it in practice.’

Open access

Open access means that scientific publications on the results of research supported by public and public-private funds must be freely accessible to everyone. That is not yet the case. The results of publicly funded research are currently not accessible to people outside universities and knowledge institutions. As a result, teachers, doctors and entrepreneurs do not have access to the latest scientific insights that are so relevant to their work, and universities have to take out expensive subscriptions with publishers to gain access to publications.

Reusing research data

From 2020, all scientific publications on the results of publicly funded research must be freely available. It also must be able to optimally reuse research data. To achieve that, the data must be made accessible, unless there are well-founded reasons for not doing so, for example intellectual property rights or security or privacy issues….(More)”

Time for sharing data to become routine: the seven excuses for not doing so are all invalid

Curated on Posted on by Stefaan Verhulst

Paper by Richard Smith and Ian Roberts: “Data are more valuable than scientific papers but researchers are incentivised to publish papers not share data. Patients are the main beneficiaries of data sharing but researchers have several incentives not to share: others might use their data to get ahead in the academic rat race; they might be scooped; their results might not be replicable; competitors may reach different conclusions; their data management might be exposed as poor; patient confidentiality might be breached; and technical difficulties make sharing impossible. All of these barriers can be overcome and researchers should be rewarded for sharing data. Data sharing must become routine….(More)”

Data Science Ethical Framework

Curated on Posted on by Stefaan Verhulst

UK Cabinet Office: “Data science provides huge opportunities for government. Harnessing new forms of data with increasingly powerful computer techniques increases operational efficiency, improves public services and provides insight for better policymaking.

We want people in government to feel confident using data science techniques to innovate. This guidance is intended to bring together relevant laws and best practice, to give teams robust principles to work with.

The publication is a first version that we are asking the public, experts, civil servants and other interested parties to help us perfect and iterate. This will include taking on evidence from a public dialogue on data science ethics. It was published on 19 May by the Minister for Cabinet Office, Matt Hancock. If you would like to help us iterate the framework, find out how to get in touch at the end of this blog. See Data Science Ethical Framework (PDF, 8.28MB, 17 pages). This file may not be suitable for users of assistive technology. Request an accessible format.“

Improving patient care by bridging the divide between doctors and data scientists

Curated on Posted on by Stefaan Verhulst

 at the Conversation: “While wonderful new medical discoveries and innovations are in the news every day, doctors struggle daily with using information and techniques available right now while carefully adopting new concepts and treatments. As a practicing doctor, I deal with uncertainties and unanswered clinical questions all the time….At the moment, a report from the National Academy of Medicine tells us, most doctors base most of their everyday decisions on guidelines from (sometimes biased) expert opinions or small clinical trials. It would be better if they were from multicenter, large, randomized controlled studies, with tightly controlled conditions ensuring the results are as reliable as possible. However, those are expensive and difficult to perform, and even then often exclude a number of important patient groups on the basis of age, disease and sociological factors.

Part of the problem is that health records are traditionally kept on paper, making them hard to analyze en masse. As a result, most of what medical professionals might have learned from experiences was lost – or at least was inaccessible to another doctor meeting with a similar patient.

A digital system would collect and store as much clinical data as possible from as many patients as possible. It could then use information from the past – such as blood pressure, blood sugar levels, heart rate and other measurements of patients’ body functions – to guide future doctors to the best diagnosis and treatment of similar patients.

Industrial giants such as Google, IBM, SAP and Hewlett-Packard have also recognized the potential for this kind of approach, and are now working on how to leverage population data for the precise medical care of individuals.

Collaborating on data and medicine

At the Laboratory of Computational Physiology at the Massachusetts Institute of Technology, we have begun to collect large amounts of detailed patient data in the Medical Information Mart in Intensive Care (MIMIC). It is a database containing information from 60,000 patient admissions to the intensive care units of the Beth Israel Deaconess Medical Center, a Boston teaching hospital affiliated with Harvard Medical School. The data in MIMIC has been meticulously scoured so individual patients cannot be recognized, and is freely shared online with the research community.

But the database itself is not enough. We bring together front-line clinicians (such as nurses, pharmacists and doctors) to identify questions they want to investigate, and data scientists to conduct the appropriate analyses of the MIMIC records. This gives caregivers and patients the best individualized treatment options in the absence of a randomized controlled trial.

Bringing data analysis to the world

At the same time we are working to bring these data-enabled systems to assist with medical decisions to countries with limited health care resources, where research is considered an expensive luxury. Often these countries have few or no medical records – even on paper – to analyze. We can help them collect health data digitally, creating the potential to significantly improve medical care for their populations.

This task is the focus of Sana, a collection of technical, medical and community experts from across the globe that is also based in our group at MIT. Sana has designed a digital health information system specifically for use by health providers and patients in rural and underserved areas.

At its core is an open-source system that uses cellphones – common even in poor and rural nations – to collect, transmit and store all sorts of medical data. It can handle not only basic patient data such as height and weight, but also photos and X-rays, ultrasound videos, and electrical signals from a patient’s brain (EEG) and heart (ECG).

Partnering with universities and health organizations, Sana organizes training sessions (which we call “bootcamps”) and collaborative workshops (called “hackathons”) to connect nurses, doctors and community health workers at the front lines of care with technology experts in or near their communities. In 2015, we held bootcamps and hackathons in Colombia, Uganda, Greece and Mexico. The bootcamps teach students in technical fields like computer science and engineering how to design and develop health apps that can run on cellphones. Immediately following the bootcamp, the medical providers join the group and the hackathon begins…At the end of the day, though, the purpose is not the apps….(More)

Health care data as a public utility: how do we get there?

Curated on Posted on by Stefaan Verhulst

Mohit Kaushal and Margaret Darling at Brookings: “Forty-six million Americans use mobile fitness and health apps. Over half of providers serving Medicare or Medicaid patients are using electronic health records (EHRs). Despite such advances and proliferation of health data and its collection, we are not yet on an inevitable path to unleashing the often-promised “power of data” because data remain proprietary and fragmented among insurers, providers, health record companies, government agencies, and researchers.

Despite the technological integration seen in banking and other industries, health care data has remained scattered and inaccessible. EHRs remain fragmented among 861 distinct ambulatory vendors and 277 inpatient vendors as of 2013. Similarly, insurance claims are stored in the databases of insurers, and information about public health—including information about the social determinants of health, such as housing, food security, safety, and education—is often kept in databases belonging to various governmental agencies. These silos wouldn’t necessarily be a problem, except for the lack of interoperability that has long plagued the health care industry.

For this reason, many are reconsidering if health care data is a public good, provided to all members of the public without profit. This idea is not new. In fact, the Institute of Medicine established the Roundtable on Value and Science-Driven Healthcare, citing that:

“A significant challenge to progress resides in the barriers and restrictions that derive from the treatment of medical care data as a proprietary commodity by the organizations involved. Even clinical research and medical care data developed with public funds are often not available for broader analysis and insights. Broader access and use of healthcare data for new insights require not only fostering data system reliability and interoperability but also addressing the matter of individual data ownership and the extent to which data central to progress in health and health care should constitute a public good.”

Indeed, publicly available health care data holds the potential to unlock many innovations, much like what public goods have done in other industries. As publicly available weather data has shown, the public utility of open access information is not only good for consumers, itis good for businesses…(More)”

The Small World Initiative: An Innovative Crowdsourcing Platform for Antibiotics

Curated on Posted on by Stefaan Verhulst

Ana Maria Barral et al in FASEB Journal: “The Small World Initiative™ (SWI) is an innovative program that encourages students to pursue careers in science and sets forth a unique platform to crowdsource new antibiotics. It centers around an introductory biology course through which students perform original hands-on field and laboratory research in the hunt for new antibiotics. Through a series of student-driven experiments, students collect soil samples, isolate diverse bacteria, test their bacteria against clinically-relevant microorganisms, and characterize those showing inhibitory activity. This is particularly relevant since over two thirds of antibiotics originate from soil bacteria or fungi. SWI’s approach also provides a platform to crowdsource antibiotic discovery by tapping into the intellectual power of many people concurrently addressing a global challenge and advances promising candidates into the drug development pipeline. This unique class approach harnesses the power of active learning to achieve both educational and scientific goals…..We will discuss our preliminary student evaluation results, which show the compelling impact of the program in comparison to traditional introductory courses. Ultimately, the mission of the program is to provide an evidence-based approach to teaching introductory biology concepts in the context of a real-world problem. This approach has been shown to be particularly impactful on underrepresented STEM talent pools, including women and minorities….(More)”

Scientists Are Just as Confused About the Ethics of Big-Data Research as You

Curated on Posted on by Stefaan Verhulst

Sarah Zhang at Wired: “When a rogue researcher last week released 70,000 OkCupid profiles, complete with usernames and sexual preferences, people were pissed. When Facebook researchers manipulated stories appearing in Newsfeeds for a mood contagion study in 2014, people were really pissed. OkCupid filed a copyright claim to take down the dataset; the journal that published Facebook’s study issued an “expression of concern.” Outrage has a way of shaping ethical boundaries. We learn from mistakes.

Shockingly, though, the researchers behind both of those big data blowups never anticipated public outrage. (The OkCupid research does not seem to have gone through any kind of ethical review process, and a Cornell ethics review board approved the Facebook experiment.) And that shows just how untested the ethics of this new field of research is. Unlike medical research, which has been shaped by decades of clinical trials, the risks—and rewards—of analyzing big, semi-public databases are just beginning to become clear.

And the patchwork of review boards responsible for overseeing those risks are only slowly inching into the 21st century. Under the Common Rule in the US, federally funded research has to go through ethical review. Rather than one unified system though, every single university has its own institutional review board, or IRB. Most IRB members are researchers at the university, most often in the biomedical sciences. Few are professional ethicists.

Even fewer have computer science or security expertise, which may be necessary to protect participants in this new kind of research. “The IRB may make very different decisions based on who is on the board, what university it is, and what they’re feeling that day,” says Kelsey Finch, policy counsel at the Future of Privacy Forum. There are hundreds of these IRBs in the US—and they’re grappling with research ethics in the digital age largely on their own….

Or maybe other institutions, like the open science repositories asking researchers to share data, should be picking up the slack on ethical issues. “Someone needs to provide oversight, but the optimal body is unlikely to be an IRB, which usually lacks subject matter expertise in de-identification and re-identification techniques,” Michelle Meyer, a bioethicist at Mount Sinai, writes in an email.

Even among Internet researchers familiar with the power of big data, attitudes vary. When Katie Shilton, an information technology research at the University of Maryland, interviewed 20 online data researchers, she found “significant disagreement” over issues like the ethics of ignoring Terms of Service and obtaining informed consent. Surprisingly, the researchers also said that ethical review boards had never challenged the ethics of their work—but peer reviewers and colleagues had. Various groups like theAssociation of Internet Researchers and the Center for Applied Internet Data Analysis have issued guidelines, but the people who actually have power—those on institutional review boards–are only just catching up.

Outside of academia, companies like Microsoft have started to institute their own ethical review processes. In December, Finch at the Future of Privacy Forum organized a workshop called Beyond IRBs to consider processes for ethical review outside of federally funded research. After all, modern tech companies like Facebook, OkCupid, Snapchat, Netflix sit atop a trove of data 20th century social scientists could have only dreamed up.

Of course, companies experiment on us all the time, whether it’s websites A/B testing headlines or grocery stores changing the configuration of their checkout line. But as these companies hire more data scientists out of PhD programs, academics are seeing an opportunity to bridge the divide and use that data to contribute to public knowledge. Maybe updated ethical guidelines can be forged out of those collaborations. Or it just might be a mess for a while….(More)”

Robot Regulators Could Eliminate Human Error

Curated on Posted on by Stefaan Verhulst

 in the San Francisco Chronicle and Regblog: “Long a fixture of science fiction, artificial intelligence is now part of our daily lives, even if we do not realize it. Through the use of sophisticated machine learning algorithms, for example, computers now work to filter out spam messages automatically from our email. Algorithms also identify us by our photos on Facebook, match us with new friends on online dating sites, and suggest movies to watch on Netflix.

These uses of artificial intelligence hardly seem very troublesome. But should we worry if government agencies start to use machine learning?

Complaints abound even today about the uncaring “bureaucratic machinery” of government. Yet seeing how machine learning is starting to replace jobs in the private sector, we can easily fathom a literal machinery of government in which decisions made by human public servants increasingly become made by machines.

Technologists warn of an impending “singularity,” when artificial intelligence surpasses human intelligence. Entrepreneur Elon Musk cautions that artificial intelligence poses one of our “biggest existential threats.” Renowned physicist Stephen Hawking eerily forecasts that artificial intelligence might even “spell the end of the human race.”

Are we ready for a world of regulation by robot? Such a world is closer than we think—and it could actually be worth welcoming.

Already government agencies rely on machine learning for a variety of routine functions. The Postal Service uses learning algorithms to sort mail, and cities such as Los Angeles use them to time their traffic lights. But while uses like these seem relatively benign, consider that machine learning could also be used to make more consequential decisions. Disability claims might one day be processed automatically with the aid of artificial intelligence. Licenses could be awarded to airplane pilots based on what kinds of safety risks complex algorithms predict each applicant poses.

Learning algorithms are already being explored by the Environmental Protection Agency to help make regulatory decisions about what toxic chemicals to control. Faced with tens of thousands of new chemicals that could potentially be harmful to human health, federal regulators have supported the development of a program to prioritize which of the many chemicals in production should undergo the more in-depth testing. By some estimates, machine learning could save the EPA up to $980,000 per toxic chemical positively identified.

It’s not hard then to imagine a day in which even more regulatory decisions are automated. Researchers have shown that machine learning can lead to better outcomes when determining whether parolees ought to be released or domestic violence orders should be imposed. Could the imposition of regulatory fines one day be determined by a computer instead of a human inspector or judge? Quite possibly so, and this would be a good thing if machine learning could improve accuracy, eliminate bias and prejudice, and reduce human error, all while saving money.

But can we trust a government that bungled the initial rollout of Healthcare.gov to deploy artificial intelligence responsibly? In some circumstances we should….(More)”

Big Data for public policy: the quadruple helix

Curated on Posted on by Stefaan Verhulst

Julia Lane in the Journal of Policy Analysis and Management: “Data from the federal statistical system, particularly the Census Bureau, have long been a key resource for public policy. Although most of those data have been collected through purposive surveys, there have been enormous strides in the use of administrative records on business (Jarmin & Miranda, 2002), jobs (Abowd, Halti- wanger, & Lane, 2004), and individuals (Wagner & Layne, 2014). Those strides are now becoming institutionalized. The President has allocated $10 million to an Administrative Records Clearing House in his FY2016 budget. Congress is considering a bill to use administrative records, entitled the Evidence-Based Policymaking Commission Act, sponsored by Patty Murray and Paul Ryan. In addition, the Census Bureau has established a Center for “Big Data.” In my view, these steps represent important strides for public policy, but they are only part of the story. Public policy researchers must look beyond the federal statistical system and make use of the vast resources now available for research and evaluation.

All politics is local; “Big Data” now mean that policy analysis can increasingly be local. Modern empirical policy should be grounded in data provided by a network of city/university data centers. Public policy schools should partner with scholars in the emerging field of data science to train the next generation of policy researchers in the thoughtful use of the new types of data; the apparent secular decline in the applications to public policy schools is coincident with the emergence of data science as a field of study in its own right. The role of national statistical agencies should be fundamentally rethought—and reformulated to one of four necessary strands in the data infrastructure; that of providing benchmarks, confidentiality protections, and national statistics….(More)”

Society’s biggest problems need more than a nudge

Curated on Posted on by Stefaan Verhulst

 at the Conversation: “So-called “nudge units” are popping up in governments all around the world.

The best-known examples include the U.K.’s Behavioural Insights Team, created in 2010, and the White House-based Social and Behavioral Sciences Team, introduced by the Obama administration in 2014. Their mission is to leverage findings from behavioral science so that people’s decisions can be nudged in the direction of their best intentions without curtailing their ability to make choices that don’t align with their priorities.

Overall, these – and other – governments have made important strides when it comes to using behavioral science to nudge their constituents into better choices.

Yet, the same governments have done little to improve their own decision-making processes. Consider big missteps like the Flint water crisis. How could officials in Michigan decide to place an essential service – safe water – and almost 100,000 people at risk in order to save US$100 per day for three months? No defensible decision-making process should have allowed this call to be made.

When it comes to many of the big decisions faced by governments – and the private sector – behavioral science has more to offer than simple nudges.

Behavioral scientists who study decision-making processes could also help policy-makers understand why things went wrong in Flint, and how to get their arms around a wide array of society’s biggest problems – from energy transitions to how to best approach the refugee crisis in Syria.

When nudges are enough

The idea of nudging people in the direction of decisions that are in their own best interest has been around for a while. But it was popularized in 2008 with the publication of the bestseller “Nudge“ by Richard Thaler of the University of Chicago and Cass Sunstein of Harvard.

A common nudge goes something like this: if we want to eat better but are having a hard time doing it, choice architects can reengineer the environment in which we make our food choices so that healthier options are intuitively easier to select, without making it unrealistically difficult to eat junk food if that’s what we’d rather do. So, for example, we can shelve healthy foods at eye level in supermarkets, with less-healthy options relegated to the shelves nearer to the floor….

Sometimes a nudge isn’t enough

Nudges work for a wide array of choices, from ones we face every day to those that we face infrequently. Likewise, nudges are particularly well-suited to decisions that are complex with lots of different alternatives to choose from. And, they are advocated in situations where the outcomes of our decisions are delayed far enough into the future that they feel uncertain or abstract. This describes many of the big decisions policy-makers face, so it makes sense to think the solution must be more nudge units.

But herein lies the rub. For every context where a nudge seems like a realistic option, there’s at least another context where the application of passive decision support would be either be impossible – or, worse, a mistake.

Take, for example, the question of energy transitions. These transitions are often characterized by the move from infrastructure based on fossil fuels to renewables to address all manner of risks, including those from climate change. These are decisions that society makes infrequently. They are complex. And, the outcomes – which are based on our ability to meet conflicting economic, social and environmental objectives – will be delayed.

But, absent regulation that would place severe restrictions on the kinds of options we could choose from – and which, incidentally, would violate the freedom-of-choice tenet of choice architecture – there’s no way to put renewable infrastructure options at proverbial eye level for state or federal decision-makers, or their stakeholders.

Simply put, a nudge for a decision like this would be impossible. In these cases, decisions have to be made the old-fashioned way: with a heavy lift instead of a nudge.

Complex policy decisions like this require what we call active decision support….(More)”