media

Big Data, Little Data, No Data

Curated on April 14, 2015November 20, 2018 by Stefaan Verhulst

New book by Christine L. Borgman: “Big Data” is on the covers of Science, Nature, the Economist, and Wired magazines, on the front pages of the Wall Street Journal and the New York Times. But despite the media hyperbole, as Christine Borgman points out in this examination of data and scholarly research, having the right data is usually better than having more data; little data can be just as valuable as big data. In many cases, there are no data—because relevant data don’t exist, cannot be found, or are not available. Moreover, data sharing is difficult, incentives to do so are minimal, and data practices vary widely across disciplines.

Borgman, an often-cited authority on scholarly communication, argues that data have no value or meaning in isolation; they exist within a knowledge infrastructure—an ecology of people, practices, technologies, institutions, material objects, and relationships. After laying out the premises of her investigation—six “provocations” meant to inspire discussion about the uses of data in scholarship—Borgman offers case studies of data practices in the sciences, the social sciences, and the humanities, and then considers the implications of her findings for scholarly practice and research policy. To manage and exploit data over the long term, Borgman argues, requires massive investment in knowledge infrastructures; at stake is the future of scholarship….(More)”

The Healing Power of Your Own Medical Data

Curated on March 31, 2015August 3, 2018 by Stefaan Verhulst

Steve Lohr in the New York Times: “Steven Keating’s doctors and medical experts view him as a citizen of the future.

A scan of his brain eight years ago revealed a slight abnormality — nothing to worry about, he was told, but worth monitoring. And monitor he did, reading and studying about brain structure, function and wayward cells, and obtaining a follow-up scan in 2010, which showed no trouble.

But he knew from his research that his abnormality was near the brain’s olfactory center. So when he started smelling whiffs of vinegar last summer, he suspected they might be “smell seizures.”

He pushed doctors to conduct an M.R.I., and three weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball from his brain.

At every stage, Mr. Keating, a 26-year-old doctoral student at the Massachusetts Institute of Technology’s Media Lab, has pushed and prodded to get his medical information, collecting an estimated 70 gigabytes of his own patient data by now. His case points to what medical experts say could be gained if patients had full and easier access to their medical information. Better-informed patients, they say, are more likely to take better care of themselves, comply with prescription drug regimens and even detect early-warning signals of illness, as Mr. Keating did.

“Today he is a big exception, but he is also a glimpse of what people will want: more and more information,” said Dr. David W. Bates, chief innovation officer at Brigham and Women’s Hospital.

Some of the most advanced medical centers are starting to make medical information more available to patients. Brigham and Women’s, where Mr. Keating had his surgery, is part of the Partners HealthCare Group, which now has 500,000 patients with web access to some of the information in their health records including conditions, medications and test results.

Other medical groups are beginning to allow patients online access to the notes taken by physicians about them, in an initiative called OpenNotes. In a yearlong evaluation project at medical groups in three states, more than two-thirds of the patients reported having a better understanding of their health and medical conditions, adopting healthier habits and taking their medications as prescribed more regularly.

The medical groups with OpenNotes programs include Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, Harborview Medical Center in Seattle, the Mayo Clinic, the Cleveland Clinic and the Veterans Affairs department. By now, nearly five million patients in America have been given online access to their notes.

As an articulate young scientist who had studied his condition, Mr. Keating had a big advantage over most patients in obtaining his data. He knew what information to request, spoke the language of medicine and did not need help. The information he collected includes the video of his 10-hour surgery, dozens of medical images, genetic sequencing data and 300 pages of clinical documents. Much of it is on his website, and he has made his medical data available for research….

Opening data to patients raises questions. Will worried patients inundate physicians with time-consuming questions? Will sharing patient data add to legal risks? One detail in the yearlong study of OpenNotes underlines doctors’ concerns; 105 primary physicians completed the study, but 143 declined to participate.

Still, the experience of the doctors in the evaluation seemed reassuring. Only 3 percent said they spent more time answering patient questions outside of visits. Yet knowing that patients could read the notes, one-fifth of the physicians said they changed the way they wrote about certain conditions, like substance abuse and obesity.

Evidence of the benefit to individuals from sharing information rests mainly on a few studies so far. For example, 55 percent of the members of the epilepsy community on PatientsLikeMe, a patient network, reported that sharing information and experiences with others helped them learn about seizures, and 27 percent said it helped them be more adherent to their medications.

Mr. Keating has no doubts. “Data can heal,” he said. “There is a huge healing power to patients understanding and seeing the effects of treatments and medications.”

Health information, by its very nature, is personal. So even when names and other identifiers are stripped off, sharing personal health data more freely with patients, health care providers and researchers raises thorny privacy issues.

Mr. Keating says he is a strong believer in privacy, but he personally believes that the benefits outweigh the risks — and whether to share data or not should be an individual’s choice and an individual responsibility.

Not everyone, surely, would be as comfortable as Mr. Keating is sharing all his medical information. But he says he believes that people will increasingly want access to their medical data and will share it, especially younger people reared on social networks and smartphones.

“This is what the next generation, which lives on data, is going to want,” Mr. Keating said….(More)”

Open-Data Project Adds Transparency to African Elections

Curated on March 31, 2015May 29, 2019 by Stefaan Verhulst

Jessica Weiss at the International Center for Journalists: “An innovative tool developed to help people register to vote in Kenya is proving to be a valuable asset to voters across the African continent.

GotToVote was created in 2012 by two software developers under the guidance of ICFJ’s Knight International Journalism Fellow Justin Arenstein for use during Kenya’s general elections. In just 24 hours, the developers took voter registration information in a government PDF and turned it into a simple website with usable data that helped people locate the nearest voting center where they could register for elections. Kenyan media drove a large audience to the site, which resulted in a major boost in voter registrations.

Since then, GotToVote has helped people register to vote in Malawi and Zimbabwe. Now, it is being adapted for use in national elections in Ghana and Uganda in 2016.

Ugandan civic groups led by The African Freedom of Information Centre are planning to use it to help people register, to verify registrations and for SMS registration drives. They are also proposing new features—including digital applications to help citizens post issues of concern and compare political positions between parties and candidates so voters better understand the choices they are being offered.

In Ghana, GotToVote is helping citizens find their nearest registration center to make sure they are eligible to vote in that country’s 2016 national elections. The tool, which is optimized for mobile devices, makes voter information easily accessible to the public. It explains who is eligible to register for the 2016 general elections and gives a simple overview of the voter registration process. It also tells users what documentation to take with them to register…..

Last year, Malawi’s national government used GotToVote to check whether voters were correctly registered. As a result, more than 20,000 were found to be incorrectly registered, because they were not qualified voters or were registered in the wrong constituency. In 2013, thousands used GotToVote via their mobile and tablet devices to find their polling places in Zimbabwe.

The successful experiment provides a number of lessons about the power and feasibility of open data projects, showing that they don’t require large teams, big budgets or a lot of time to build…(More)“

Can Big Data Measure Livability in Cities?

Curated on March 29, 2015August 3, 2018 by Stefaan Verhulst

PlaceILive: “Big data helps us measure and predict consumer behavior, hurricanes and even pregnancies. It has revolutionized the way we access and use information. That being said, so far big data has not been able to tackle bigger issues like urbanization or improve the livability of cities.

A new startup, www.placeilive.com thinks big data should and can be used to measure livability. They aggregated open data from government institutions and social media to create a tool that can calculate just that. ….PlaceILive wants to help people and governments better understand their cities, so that they can make smarter decisions. Cities can be more sustainable, while its users save money and time when they are choosing a new home.

Not everyone is eager to read long lists of raw data. Therefore they created appealing user-friendly maps that visualize the statistics. Offering the user fast and accessible information on the neighborhoods that matter to them.

Another cornerstone of PlaceILive is their Life Quality Index: an algorithm that takes aspects like transportation, safety, and affordability into account. Making it possible for people to easily compare the livability of different houses. You can read more on the methodology and sources here.

In its beta form, the site features five cities—New York City, Chicago, San Francisco, London and Berlin. When you click on the New York portal, for instance, you can search for the place you want to know more about by borough, zip code, or address. Using New York as an example, it looks like this….(More)

Big Data for Social Good

Curated on March 22, 2015August 3, 2018 by Stefaan Verhulst

Introduction to a Special Issue of the Journal “Big Data” by Catlett Charlie and Ghani Rayid: “…organizations focused on social good are realizing the potential as well but face several challenges as they seek to become more data-driven. The biggest challenge they face is a paucity of examples and case studies on how data can be used for social good. This special issue of Big Data is targeted at tackling that challenge and focuses on highlighting some exciting and impactful examples of work that uses data for social good. The special issue is just one example of the recent surge in such efforts by the data science community. …

This special issue solicited case studies and problem statements that would either highlight (1) the use of data to solve a social problem or (2) social challenges that need data-driven solutions. From roughly 20 submissions, we selected 5 articles that exemplify this type of work. These cover five broad application areas: international development, healthcare, democracy and government, human rights, and crime prevention.

“Understanding Democracy and Development Traps Using a Data-Driven Approach” (Ranganathan et al.) details a data-driven model between democracy, cultural values, and socioeconomic indicators to identify a model of two types of “traps” that hinder the development of democracy. They use historical data to detect causal factors and make predictions about the time expected for a given country to overcome these traps.

“Targeting Villages for Rural Development Using Satellite Image Analysis” (Varshney et al.) discusses two case studies that use data and machine learning techniques for international economic development—solar-powered microgrids in rural India and targeting financial aid to villages in sub-Saharan Africa. In the process, the authors stress the importance of understanding the characteristics and provenance of the data and the criticality of incorporating local “on the ground” expertise.

In “Human Rights Event Detection from Heterogeneous Social Media Graphs,” Chen and Neil describe efficient and scalable techniques to use social media in order to detect emerging patterns in human rights events. They test their approach on recent events in Mexico and show that they can accurately detect relevant human rights–related tweets prior to international news sources, and in some cases, prior to local news reports, which could potentially lead to more timely, targeted, and effective advocacy by relevant human rights groups.

“Finding Patterns with a Rotten Core: Data Mining for Crime Series with Core Sets” (Wang et al.) describes a case study with the Cambridge Police Department, using a subspace clustering method to analyze the department’s full housebreak database, which contains detailed information from thousands of crimes from over a decade. They find that the method allows human crime analysts to handle vast amounts of data and provides new insights into true patterns of crime committed in Cambridge…..(More)

Our New Three Rs: Rigor, Relevance, and Readability

Curated on March 16, 2015August 3, 2018 by Stefaan Verhulst

Article by Stephen J. Del Rosso in Governance: “…Because of the dizzying complexity of the contemporary world, the quest for a direct relationship between academic scholarship and its policy utility is both quixotic and unnecessary. The 2013 U.S. Senate’s vote to prohibit funding for political science projects through the National Science Foundation, except for those certified “as promoting national security or the economic interests of the United States,” revealed a fundamental misreading of the nonlinear path between idea and policy. Rather than providing a clear blueprint for addressing emergent or long-standing challenges, a more feasible role for academic scholarship is what political scientist Roland Paris describes as helping to “order the world in which officials operate.” Scholarly works can “influence practitioners’ understandings of what is possible or desirable in a particular policy field or set of circumstances,” he believes, by “creating operational frameworks for … identifying options and implementing policies.”

It is sometimes claimed that think tanks should play the main role in conveying scholarly insights to policymakers. But, however they may have mastered the sound bite, the putative role of think tanks as effective transmission belts for policy-relevant ideas is limited by their lack of academic rigor and systematic peer review. There is also a tendency, particularly among some “Inside the Beltway” experts, to trim their sails to the prevailing political winds and engage in self-censorship to keep employment options open in current or future presidential administrations. Scholarship’s comparative advantage in the marketplace of ideas is also evident in terms of its anticipatory function—the ability to loosen the intellectual bolts for promising policies not quite ready for implementation. A classic example is Swedish Nobel laureate Gunner Myrdal’s 1944 study of race relations, The American Dilemma, which was largely ignored and even disavowed by its sponsors for over a decade until it proved essential to the landmark Supreme Court decision in Brown v. Board of Education. Moreover, it should also be noted, rather than providing a detailed game plan for addressing the problem of race in the country, Myrdal’s work was a quintessential example of the power of scholarship to frame critically important issues.

To bridge the scholarship–policy gap, academics must balance rigor and relevance with a third “R”—readability. There is no shortage of important scholarly work that goes unnoticed or unread because of its presentation. Scholars interested in having influence beyond the ivory tower need to combine their pursuit of disciplinary requirements with efforts to make their work more intelligible and accessible to a broader audience. For example, new forms of dissemination, such as blogs and other social media innovations, provide policy-relevant scholars with ample opportunities to supplement more traditional academic outlets. The recent pushback from the editors of the International Studies Association’s journals to the announced prohibition on their blogging is one indication that the cracks in the old system are already appearing.

At the risk of oversimplification, there are three basic tribes populating the political science field. One tribe comprises those who “get it” when it comes to the importance of policy relevance, a second eschews such engagement with the real world in favor of knowledge for knowledge’s sake, and a third is made up of anxious untenured assistant professors who seek to follow the path that will best provide them with secure employment. If war, as was famously said, is too important to be left to the generals, then the future of the political science field is too important to be left to the intellectual ostriches who bury their heads in self-referential esoterica. However, the first tribe needs to be supported, and the third tribe needs to be shown that there is professional value in engaging with the world, both to enlighten and, perhaps more importantly, to provoke—a sentiment the policy-relevant scholar and inveterate provocateur, Huntington, would surely have endorsed…(More)”