Big Data Coming In Faster Than Biomedical Researchers Can Process It

Curated on Posted on by Stefaan Verhulst

Richard Harris at NPR: “Biomedical research is going big-time: Megaprojects that collect vast stores of data are proliferating rapidly. But scientists’ ability to make sense of all that information isn’t keeping up.

This conundrum took center stage at a meeting of patient advocates, called Partnering For Cures, in New York City on Nov. 15.

On the one hand, there’s an embarrassment of riches, as billions of dollars are spent on these megaprojects.

There’s the White House’s Cancer Moonshot (which seeks to make 10 years of progress in cancer research over the next five years), the Precision Medicine Initiative (which is trying to recruit a million Americans to glean hints about health and disease from their data), The BRAIN Initiative (to map the neural circuits and understand the mechanics of thought and memory) and the International Human Cell Atlas Initiative (to identify and describe all human cell types).

“It’s not just that any one data repository is growing exponentially, the number of data repositories is growing exponentially,” said Dr. Atul Butte, who leads the Institute for Computational Health Sciences at the University of California, San Francisco.

One of the most remarkable efforts is the federal government’s push to get doctors and hospitals to put medical records in digital form. That shift to electronic records is costing billions of dollars — including more than $28 billion alone in federal incentives to hospitals, doctors and others to adopt them. The investment is creating a vast data repository that could potentially be mined for clues about health and disease, the way websites and merchants gather data about you to personalize the online ads you see and for other commercial purposes.

But, unlike the data scientists at Google and Facebook, medical researchers have done almost nothing as yet to systematically analyze the information in these records, Butte said. “As a country, I think we’re investing close to zero analyzing any of that data,” he said.

Prospecting for hints about health and disease isn’t going to be easy. The raw data aren’t very robust and reliable. Electronic medical records are often kept in databases that aren’t compatible with one another, at least without a struggle. Some of the potentially revealing details are also kept as free-form notes, which can be hard to extract and interpret. Errors commonly creep into these records….(More)”

Can we rely on DIY air pollution sensors?

Curated on Posted on by Stefaan Verhulst

 at the Conversation: “Until recently, measuring air pollution was a task that could be performed only by trained scientists using very sophisticated – and very expensive – equipment. That has changed with the rapid growth of small, inexpensive sensors that can be assembled by almost anyone. But an important question remains: Do these instruments measure what users think they are measuring?

A number of venture capital-backed startup or crowd-funded groups are marketing sensors by configuring a few dollars’ worth of electronics and some intellectual property – mainly software – into aesthetically pleasing packages. The Air Quality Egg, the Tzoa and the Speck sensor are examples of gadgets that are growing in popularity for measuring air pollutants.

These devices make it possible for individuals without specialized training to monitor air quality. As an environmental health researcher, I’m happy to see that people are interested in clean air, especially because air pollution is closely linked with serious health effects. But there are important concerns about how well and how accurately these sensors work.

At their core, these devices rely on inexpensive, and often uncertain, measurement technologies. Someday small sensors costing less than US$100 may replace much more expensive research-grade instruments like those used by government regulators. But that day is likely to be far away.

New territory for a known technology

Pollution sensors that measure air contaminants have been on the market for many years. Passenger cars have sophisticated emission controls that rely on data collected by air sensors inside the vehicles. These inexpensive sensors use well-established chemical and physical methods – typically, electrochemistry or metal oxide resistance – to measure air contaminants in highly polluted conditions, such as inside the exhaust pipe of a passenger vehicle. And this information is used by the vehicle to improve performance.

It turns out that these sensors can work outside of your car too. But they have some important limits….(More)”

Big data promise exponential change in healthcare

Curated on Posted on by Stefaan Verhulst

Gonzalo Viña in the Financial Times (Special Report: Innovation in Healthcare): “When a top Formula One team is using pit stop data-gathering technology to help a drugmaker improve the way it makes ventilators for asthma sufferers, there can be few doubts that big data are transforming pharmaceutical and healthcare systems.

GlaxoSmithKline employs online technology and a data algorithm developed by F1’s elite McLaren Applied Technologies team to minimise the risk of leakage from its best-selling Ventolin (salbutamol) bronchodilator drug.

Using multiple sensors and hundreds of thousands of readings, the potential for leakage is coming down to “close to zero”, says Brian Neill, diagnostics director in GSK’s programme and risk management division.

This apparently unlikely venture for McLaren, known more as the team of such star drivers as Fernando Alonso and Jenson Button, extends beyond the work it does with GSK. It has partnered with Birmingham Children’s hospital in a £1.8m project utilising McLaren’s expertise in analysing data during a motor race to collect such information from patients as their heart and breathing rates and oxygen levels. Imperial College London, meanwhile, is making use of F1 sensor technology to detect neurological dysfunction….

Big data analysis is already helping to reshape sales and marketing within the pharmaceuticals business. Great potential, however, lies in its ability to fine tune research and clinical trials, as well as providing new measurement capabilities for doctors, insurers and regulators and even patients themselves. Its applications seem infinite….

The OECD last year said governments needed better data governance rules given the “high variability” among OECD countries about protecting patient privacy. Recently, DeepMind, the artificial intelligence company owned by Google, signed a deal with a UK NHS trust to process, via a mobile app, medical data relating to 1.6m patients. Privacy advocates say this as “worrying”. Julia Powles, a University of Cambridge technology law expert, asks if the company is being given “a free pass” on the back of “unproven promises of efficiency and innovation”.

Brian Hengesbaugh, partner at law firm Baker & McKenzie in Chicago, says the process of solving such problems remains “under-developed”… (More)“

New Data Portal to analyze governance in Africa

Curated on Posted on by Stefaan Verhulst

Press Release: “The Mo Ibrahim Foundation launched today the new IIAG Data Portal, which provides unprecedented access to 15 years of data, crucial to assessing the quality of governance in African countries. The Data Portal is freely available online. It will serve as an interactive platform for in-depth analysis and review of governance performance across Africa….

The IIAG Data Portal contains a number of innovative features, including:

  • enabling users to undertake bespoke analysis of governance ranks, scores and trends over the fifteen-year period since 2000, for each of Africa’s 54 countries
  • making possible, for the first time, to examine data at the indicator-level for all 95 IIAG indicators
  • allowing users to generate visualisations and graphics from the data that are shareable online
  • providing a user-friendly interface that facilitates navigation for anyone, from expert statisticians to the public.

….Mo Ibrahim, Chair of the Mo Ibrahim Foundation, said:

Strengthening the African national statistical offices and the robustness and availability of data is crucial to unlocking the continent’s potential. It is a matter of ownership, of identity and of sovereignty. Without sound national data, there is no way you can define adequate public policies nor measure their outcomes.Giving free access to data is about empowering people. It is less eye-catching than building a hospital or a school but it is a smart way to ensure that more hospitals and schools are delivered more effectively and efficiently. I’m delighted that the Foundation can play its part in taking forward Africa’s data revolution, and I hope that our new Data Portal will support efforts to improve governance on the continent.

The IIAG data portal can be accessed online via desktop and mobile at iiag.online.”

Information Isn’t Just Power

Curated on Posted on by Stefaan Verhulst

Review by Lucy Bernholz  in the Stanford Social Innovation Review:  “Information is power.” This truism pervades Missed Information, an effort by two scientists to examine the role that information now plays as the raw material of modern scholarship, public policy, and institutional behavior. The scholars—David Sarokin, an environmental scientist for the US government, and Jay Schulkin, a research professor of neuroscience at Georgetown University—make this basic case convincingly. In its ever-present, digital, and networked form, data doesn’t just shape government policies and actions—it also creates its own host of controversies. Government policies about collecting, storing, and analyzing information fuel protests and political lobbying, opposing movements for openness and surveillance, and individual acts seen as both treason and heroism. The very fact that two scholars from such different fields are collaborating on this subject is evidence that digitized information has become the lingua franca of present-day affairs.

To Sarokin and Schulkin, the main downside to all this newly available information is that it creates an imbalance of power in who can access and control it. Governments and businesses have visibility into the lives of citizens and customers that is not reciprocated. The US government knows our every move, but we know what our government is doing only when a whistleblower tells us. Businesses have ever more data and ever-finer ways to sort and sift it, yet customers know next to nothing about what is being done with it.

The authors argue, however, that new digital networks also provide opportunities to recalibrate the balance of information and return some power to ordinary citizens. These negotiations are under way all around us. Our current political debates about security versus privacy, and the nature and scope of government transparency, show how the lines of control between governments and the governed are being redrawn. In health care, consumers, advocates, and public policymakers are starting to create online ratings of hospitals, doctors, and the costs of medical procedures. The traditional oneway street of corporate annual reporting is being supplemented by consumer ratings, customer feedback loops, and new information about supply chains and environmental and social factors. Sarokin and Schulkin go to great lengths to show the potential of tools such as comparison guides for patients or sustainability indices for shoppers to enable more informed user decisions.

This argument is important, but it is incomplete. The book’s title, Missed Information, refers to “information that is unintentionally (for the most part) overlooked in the decision-making process—overlooked both by those who provide information and by those who use it.” What is missing from the book, ironically, is a compelling discussion of why this “missed information” is missing. ….

Grouping the book with others of the “Big Data Will Save Us” genre isn’t entirely fair. Sarokin and Schulkin go to great lengths to point out how much of the information we collect is never used for anything, good or bad….(More)”

Africa’s health won’t improve without reliable data and collaboration

Curated on Posted on by Stefaan Verhulst

,  and  at the Conversation: “…Africa has a data problem. This is true in many sectors. When it comes to health there’s both a lack of basic population data about disease and an absence of information about what impact, if any, interventions involving social determinants of health – housing, nutrition and the like – are having.

Simply put, researchers often don’t know who is sick or what people are being exposed to that, if addressed, could prevent disease and improve health. They cannot say if poor sanitation is the biggest culprit, or if substandard housing in a particular region is to blame. They don’t have the data that explains which populations are most vulnerable.

These data are required to inform development of innovative interventions that apply a “Health in All Policies” approach to address social determinants of health and improve health equity.

To address this, health data need to be integrated with social determinant data about areas like food, housing, and physical activity or mobility. Even where population data are available, they are not always reliable. There’s often an issue of compatability: different sectors collect different kinds of information using varying methodologies.

Different sectors also use different indicators to collect information on the same social determinant of health. This makes data integration challenging.

Without clear, focused, reliable data it’s difficult to understand what a society’s problems are and what specific solutions – which may lie outside the health sector – might be suitable for that unique context.

Scaling up innovations

Some remarkable work is being done to tackle Africa’s health problems. This ranges from technological innovations to harnessing indigenous knowledge for change. Both approaches are vital. But it’s hard for these to be scaled up either in terms of numbers or reach.

This boils down to a lack of funding or a lack of access to funding. Too many potentially excellent projects remain stuck at the pilot phase, which has limited value for ordinary people…..

Governments need to develop health equity surveillance systems to overcome the current lack of data. It’s also crucial that governments integrate and monitor health and social determinants of health indicators in one central system. This would provide a better understanding of health inequity in a given context.

For this to happen, governments must work with public and private sector stakeholders and nongovernmental organisations – not just in health, but beyond it so that social determinants of health can be better measured and captured.

The data that already exists at sub-national, national, regional and continental level mustn’t just be brushed aside. It should be archived and digitised so that it isn’t lost.

Researchers have a role to play here. They have to harmonise and be innovative in the methodologies they use for data collection. If researchers can work together across the breadth of sectors and disciplines that influence health, important information won’t slip through the cracks.

When it comes to scaling up innovation, governments need to step up to the plate. It’s crucial that they support successful health innovations, whether these are rooted in indigenous knowledge or are new technologies. And since – as we’ve already shown – health issues aren’t the exclusive preserve of the health sector, governments should look to different sectors and innovative partnerships to generate support and funding….(More)”

Governance and Service Delivery: Practical Applications of Social Accountability Across Sectors

Curated on Posted on by Stefaan Verhulst

Book edited by Derick W. Brinkerhoff, Jana C. Hertz, and Anna Wetterberg: “…Historically, donors and academics have sought to clarify what makes sectoral projects effective and sustainable contributors to development. Among the key factors identified have been (1) the role and capabilities of the state and (2) the relationships between the state and citizens, phenomena often lumped together under the broad rubric of “governance.” Given the importance of a functioning state and positive interactions with citizens, donors have treated governance as a sector in its own right, with projects ranging from public sector management reform, to civil society strengthening, to democratization (Brinkerhoff, 2008). The link between governance and sectoral service delivery was highlighted in the World Bank’s 2004 World Development Report, which focused on accountability structures and processes (World Bank, 2004).

Since then, sectoral specialists’ awareness that governance interventions can contribute to service delivery improvements has increased substantially, and there is growing recognition that both technical and governance elements are necessary facets of strengthening public services. However, expanded awareness has not reliably translated into effective integration of governance into sectoral programs and projects in, for example, health, education, water, agriculture, or community development. The bureaucratic realities of donor programming offer a partial explanation…. Beyond bureaucratic barriers, though, lie ongoing gaps in practical knowledge of how best to combine attention to governance with sector-specific technical investments. What interventions make sense, and what results can reasonably be expected? What conditions support or limit both improved governance and better service delivery? How can citizens interact with public officials and service providers to express their needs, improve services, and increase responsiveness? Various models and compilations of best practices have been developed, but debates remain, and answers to these questions are far from settled. This volume investigates these questions and contributes to building understanding that will enhance both knowledge and practice. In this book, we examine six recent projects, funded mostly by the United States Agency for International Development and implemented by RTI International, that pursued several different paths to engaging citizens, public officials, and service providers on issues related to accountability and sectoral services…(More)”

Talent Gap Is a Main Roadblock as Agencies Eye Emerging Tech

Curated on Posted on by Stefaan Verhulst

Theo Douglas in GovTech: “U.S. public service agencies are closely eyeing emerging technologies, chiefly advanced analytics and predictive modeling, according to a new report from Accenture, but like their counterparts globally they must address talent and complexity issues before adoption rates will rise.

The report, Emerging Technologies in Public Service, compiled a nine-nation survey of IT officials across all levels of government in policing and justice, health and social services, revenue, border services, pension/Social Security and administration, and was released earlier this week.

It revealed a deep interest in emerging tech from the public sector, finding 70 percent of agencies are evaluating their potential — but a much lower adoption level, with just 25 percent going beyond piloting to implementation….

The revenue and tax industries have been early adopters of advanced analytics and predictive modeling, he said, while biometrics and video analytics are resonating with police agencies.

In Australia, the tax office found using voiceprint technology could save 75,000 work hours annually.

Closer to home, Utah Chief Technology Officer Dave Fletcher told Accenture that consolidating data centers into a virtualized infrastructure improved speed and flexibility, so some processes that once took weeks or months can now happen in minutes or hours.

Nationally, 70 percent of agencies have either piloted or implemented an advanced analytics or predictive modeling program. Biometrics and identity analytics were the next most popular technologies, with 29 percent piloting or implementing, followed by machine learning at 22 percent.

Those numbers contrast globally with Australia, where 68 percent of government agencies have charged into piloting and implementing biometric and identity analytics programs; and Germany and Singapore, where 27 percent and 57 percent of agencies respectively have piloted or adopted video analytic programs.

Overall, 78 percent of respondents said they were either underway or had implemented some machine-learning technologies.

The benefits of embracing emerging tech that were identified ranged from finding better ways of working through automation to innovating and developing new services and reducing costs.

Agencies told Accenture their No. 1 objective was increasing customer satisfaction. But 89 percent said they’d expect a return on implementing intelligent technology within two years. Four-fifths, or 80 percent, agreed intelligent tech would improve employees’ job satisfaction….(More).

The ethical impact of data science

Curated on Posted on by Stefaan Verhulst

Theme issue of Phil. Trans. R. Soc. A compiled and edited by Mariarosaria Taddeo and Luciano Floridi: “This theme issue has the founding ambition of landscaping data ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing and use), algorithms (including artificial intelligence, artificial agents, machine learning and robots) and corresponding practices (including responsible innovation, programming, hacking and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data ethics builds on the foundation provided by computer and information ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the level of abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations—the interactions among hardware, software and data—rather than on the variety of digital technologies that enable them. And it emphasizes the complexity of the ethical challenges posed by data science. Because of such complexity, data ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of data science and its applications within a consistent, holistic and inclusive framework. Only as a macroethics will data ethics provide solutions that can maximize the value of data science for our societies, for all of us and for our environments….(More)”

Table of Contents:

  • The dynamics of big data and human rights: the case of scientific research; Effy Vayena, John Tasioulas
  • Facilitating the ethical use of health data for the benefit of society: electronic health records, consent and the duty of easy rescue; Sebastian Porsdam Mann, Julian Savulescu, Barbara J. Sahakian
  • Faultless responsibility: on the nature and allocation of moral responsibility for distributed moral actions; Luciano Floridi
  • Compelling truth: legal protection of the infosphere against big data spills; Burkhard Schafer
  • Locating ethics in data science: responsibility and accountability in global and distributed knowledge production systems; Sabina Leonelli
  • Privacy is an essentially contested concept: a multi-dimensional analytic for mapping privacy; Deirdre K. Mulligan, Colin Koopman, Nick Doty
  • Beyond privacy and exposure: ethical issues within citizen-facing analytics; Peter Grindrod
  • The ethics of smart cities and urban science; Rob Kitchin
  • The ethics of big data as a public good: which public? Whose good? Linnet Taylor
  • Data philanthropy and the design of the infraethics for information societies; Mariarosaria Taddeo
  • The opportunities and ethics of big data: practical priorities for a national Council of Data Ethics; Olivia Varley-Winter, Hetan Shah
  • Data science ethics in government; Cat Drew
  • The ethics of data and of data science: an economist’s perspective; Jonathan Cave
  • What’s the good of a science platform? John Gallacher

 

3 Ways data has made a splash in Africa

Curated on Posted on by Stefaan Verhulst

Madolyn Smith at Data Driven Journalism: “impactAFRICA, the continent’s largest fund for data driven storytelling, has announced the winners of its water and sanitation contest. Journalists from Ghana, Nigeria, Kenya, Tanzania, South Africa and Zambia made waves with their stories, but three in particular stood out against the tide.

1. South Africa All At Sea

Sipho Kings‘ story on illegal fishing along South Africa’s coast for the Mail & Guardian shows how data from nanosatellites could solve the tricky problem of tracking illegal activities….

As well as providing a data driven solution to South Africa’s problem, this story has been credited with prompting increased naval patrols, which has uncovered a string of illegal fishing trawlers.

Read the story here.

2. Water Data for Nigeria

This tool, developed by Abiri Oluwatosin Niyi for CMapIT, tracks the supply and consumption of water in Nigeria. To combat a scarcity of data on public water resources, the project crowdsources data from citizens and water point operators. Data is updated in real-time and can be explored via an interactive map.

nigeria.PNG

Image: Water Data for Nigeria.

In addition, the underlying data is also available for free download and reuse.

Explore the project here.

3. Ibadan: A City of Deep Wells and Dry Taps

Writing for the International Centre for Investigative Reporting, Kolawole Talabi demonstrates a relationship between declining oil revenues and government water expenditure in Ibadan, Nigeria’s third largest city, with detrimental impacts on its inhabitants health.

The investigation draws on data from international organisations, like UNICEF, and government budgetary allocations, as well as qualitative interview data.

Following the story’s publication, there has been extensive online debate and numerous calls for governmental action.

Read the story here….(More)”