Data collection is the ultimate public good

Curated on Posted on by Stefaan Verhulst

Lawrence H. Summers in the Washington Post: “I spoke at a World Bank conference on price statistics. … I am convinced that data is the ultimate public good and that we will soon have much more data than we do today. I made four primary observations.

First, scientific progress is driven more by new tools and new observations than by hypothesis construction and testing. I cited a number of examples: the observation that Jupiter was orbited by several moons clinched the case against the Ptolemaic system, the belief that all celestial objects circle around the Earth. We learned of cells by seeing them when the microscope was constructed. Accelerators made the basic structure of atoms obvious.

Second, if mathematics is the queen of the hard sciences then statistics is the queen of the social sciences. I gave examples of the power of very simple data analysis. We first learned that exercise is good for health from the observation that, in the 1940s, London bus conductors had much lower death rates than bus drivers. Similarly, data demonstrated that smoking was a major killer decades before the biological processes were understood. At a more trivial level, “Moneyball” shows how data-based statistics can revolutionize a major sport.

Third, I urged that what “you count counts” and argued that we needed much more timely and complete data. I noted the centrality of timely statistics to meaningful progress toward Sustainable Development Goals. In comparison to the nearly six-year lag in poverty statistics, it took the United States only about 3½ years to win World War II.

Fourth, I envisioned what might be possible in a world where there will soon be as many smartphones as adults. With the ubiquitous ability to collect data and nearly unlimited ability to process it will come more capacity to discover previously unknown relationships. We will improve our ability to predict disasters like famines, storms and revolutions. Communication technologies will allow us to better hold policymakers to account with reliable and rapid performance measures. And if history is any guide, we will gain capacities on dimensions we cannot now imagine but will come to regard as indispensable.

This is the work of both governments and the private sector. It is fantasy to suppose data, as the ultimate public good, will come into being without government effort. Equally, we will sell ourselves short if we stick with traditional collection methods and ignore innovative providers and methods such as the use of smartphones, drones, satellites and supercomputers. That is why something like the Billion Prices Project at MIT, which can provide daily price information, is so important. That is why I am excited to be a director and involved with Premise — a data company that analyzes information people collect on their smartphones about everyday life, like the price of local foods — in its capacity to mobilize these technologies as widely as possible. That is why Planet Labs, with its capacity to scan and monitor environmental conditions, represents such a profound innovation….(More)

Technology for Transparency: Cases from Sub-Saharan Africa

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 at Havard Political Review: “Over the last decade, Africa has experienced previously unseen levels of economic growth and market vibrancy. Developing countries can only achieve equitable growth and reduce poverty rates, however, if they are able to make the most of their available resources. To do this, they must maximize the impact of aid from donor governments and NGOs and ensure that domestic markets continue to diversify, add jobs, and generate tax revenues. Yet, in most developing countries, there is a dearth of information available about industry profits, government spending, and policy outcomes that prevents efficient action.

ONE, an international advocacy organization, has estimated that $68.6 billion was lost in sub-Saharan Africa in 2012 due to a lack of transparency in government budgeting….

The Importance of Technology

Increased visibility of problems exerts pressure on politicians and other public sector actors to adjust their actions. This process is known as social monitoring, and it relies on citizens or public agencies using digital tools, such as mobile phones, Facebook, and other social media sites to spot public problems. In sub-Saharan Africa, however, traditional media companies and governments have not shown consistency in reporting on transparency issues.

New technologies offer a solution to this problem. Philip Thigo, the creator of an online and SMS platform that monitors government spending, said in an interview with Technology for Transparency, “All we are trying to do is enhance the work that [governments] do. We thought that if we could create a clear channel where communities could actually access data, then the work of government would be easier.” Networked citizen media platforms that rely on the volunteer contributions of citizens have become increasingly popular. Given that in most African countries less than 10 percent of the population has Internet access, mobile-device-based programs have proven the logical solution. About 30 percent of the population continent-wide has access to cell phones.

Lova Rakotomalala, a co-founder of an NGO in Madagascar that promotes online exposure of social grassroots projects, told the HPR, “most Malagasies will have a mobile phone and an FM radio because it helps them in their daily lives.” Rakotomalala works to provide workshops and IT training to people in regions of Madagascar where Internet access has been recently introduced. According to him, “the amount of data that we can collect from social monitoring and transparency projects will only grow in the near future. There is much room for improvement.”

Kenyan Budget Tracking Tool

The Kenyan Budget Tracking Tool is a prominent example of how social media technology can help obviate traditional transparency issues. Despite increased development assistance and foreign aid, the number of Kenyans classified as poor grew from 29 percent in the 1970s to almost 60 percent in 2000. Noticing this trend, Philip Thigo created an online and SMS platform called the Kenyan Budget Tracking Tool. The platform specifically focuses on the Constituencies Development Fund, through which members of the Kenyan parliament are able to allocate resources towards various projects, such as physical infrastructure, government offices, or new schools.

This social monitoring technology has exposed real government abuses. …

Another mobile tool, Question Box, allows Ugandans to call or message operators who have access to a database full of information on health, agriculture, and education.

But tools like Medic Mobile and the Kenyan Budget Tracking Tool are only the first steps in solving the problems that plague corrupt governments and underdeveloped communities. Improved access to information is no substitute for good leadership. However, as Rakotomalala argued, it is an important stepping-stone. “While legally binding actions are the hammer to the nail, you need to put the proverbial nail in the right place first. That nail is transparency.”…(More)

Website Seeks to Make Government Data Easier to Sift Through

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Steve Lohr at the New York Times: “For years, the federal government, states and some cities have enthusiastically made vast troves of data open to the public. Acres of paper records on demographics, public health, traffic patterns, energy consumption, family incomes and many other topics have been digitized and posted on the web.

This abundance of data can be a gold mine for discovery and insights, but finding the nuggets can be arduous, requiring special skills.

A project coming out of the M.I.T. Media Lab on Monday seeks to ease that challenge and to make the value of government data available to a wider audience. The project, called Data USA, bills itself as “the most comprehensive visualization of U.S. public data.” It is free, and its software code is open source, meaning that developers can build custom applications by adding other data.

Cesar A. Hidalgo, an assistant professor of media arts and sciences at the M.I.T. Media Lab who led the development of Data USA, said the website was devised to “transform data into stories.” Those stories are typically presented as graphics, charts and written summaries….Type “New York” into the Data USA search box, and a drop-down menu presents choices — the city, the metropolitan area, the state and other options. Select the city, and the page displays an aerial shot of Manhattan with three basic statistics: population (8.49 million), median household income ($52,996) and median age (35.8).

Lower on the page are six icons for related subject categories, including economy, demographics and education. If you click on demographics, one of the so-called data stories appears, based largely on data from the American Community Survey of the United States Census Bureau.

Using colorful graphics and short sentences, it shows the median age of foreign-born residents of New York (44.7) and of residents born in the United States (28.6); the most common countries of origin for immigrants (the Dominican Republic, China and Mexico); and the percentage of residents who are American citizens (82.8 percent, compared with a national average of 93 percent).

Data USA features a selection of data results on its home page. They include the gender wage gap in Connecticut; the racial breakdown of poverty in Flint, Mich.; the wages of physicians and surgeons across the United States; and the institutions that award the most computer science degrees….(More)

Data to the Rescue: Smart Ways of Doing Good

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Nicole Wallace in the Chronicle of Philanthropy: “For a long time, data served one purpose in the nonprofit world: measuring program results. But a growing number of charities are rejecting the idea that data equals evaluation and only evaluation.

Of course, many nonprofits struggle even to build the simplest data system. They have too little money, too few analysts, and convoluted data pipelines. Yet some cutting-edge organizations are putting data to work in new and exciting ways that drive their missions. A prime example: The Polaris Project is identifying criminal networks in the human-trafficking underworld and devising strategies to fight back by analyzing its data storehouse along with public information.

Other charities dive deep into their data to improve services, make smarter decisions, and identify measures that predict success. Some have such an abundance of information that they’re even pruning their collection efforts to allow for more sophisticated analysis.

The groups highlighted here are among the best nationally. In their work, we get a sneak peek at how the data revolution might one day achieve its promise.

House Calls: Living Goods…

Living Goods launched in eastern Africa in 2007 with an innovative plan to tackle health issues in poor families and reduce deaths among children. The charity provides loans, training, and inventory to locals in Uganda and Kenya — mostly women — to start businesses selling vitamins, medicine, and other health products to friends and neighbors.

Founder Chuck Slaughter copied the Avon model and its army of housewives-turned-sales agents. But in recent years, Living Goods has embraced a 21st-century data system that makes its entrepreneurs better health practitioners. Armed with smartphones, they confidently diagnose and treat major illnesses. At the same time, they collect information that helps the charity track health across communities and plot strategy….

Unraveling Webs of Wickedness: Polaris Project…

Calls and texts to the Polaris Project’s national human-trafficking hotline are often heartbreaking, terrifying, or both.

Relatives fear that something terrible has happened to a missing loved one. Trafficking survivors suffering from their ordeal need support. The most harrowing calls are from victims in danger and pleading for help.

Last year more than 5,500 potential cases of exploitation for labor or commercial sex were reported to the hotline. Since it got its start in 2007, the total is more than 24,000.

As it helps victims and survivors get the assistance they need, the Polaris Project, a Washington nonprofit, is turning those phone calls and texts into an enormous storehouse of information about the shadowy world of trafficking. By analyzing this data and connecting it with public sources, the nonprofit is drawing detailed pictures of how trafficking networks operate. That knowledge, in turn, shapes the group’s prevention efforts, its policy work, and even law-enforcement investigations….

Too Much Information: Year Up…

Year Up has a problem that many nonprofits can’t begin to imagine: It collects too much data about its program. “Predictive analytics really start to stink it up when you put too much in,” says Garrett Yursza Warfield, the group’s director of evaluation.

What Mr. Warfield describes as the “everything and the kitchen sink” problem started soon after Year Up began gathering data. The group, which fights poverty by helping low-income young adults land entry-level professional jobs, first got serious about measuring its work nearly a decade ago. Though challenged at first to round up even basic information, the group over time began tracking virtually everything it could: the percentage of young people who finish the program, their satisfaction, their paths after graduation through college or work, and much more.

Now the nonprofit is diving deeper into its data to figure out which measures can predict whether a young person is likely to succeed in the program. And halfway through this review, it’s already identified and eliminated measures that it’s found matter little. A small example: Surveys of participants early in the program asked them to rate their proficiency at various office skills. Those self-evaluations, Mr. Warfield’s team concluded, were meaningless: How can novice professionals accurately judge their Excel spreadsheet skills until they’re out in the working world?…

On the Wild Side: Wildnerness Society…Without room to roam, wild animals and plants breed among themselves and risk losing genetic diversity. They also fall prey to disease. And that’s in the best of times. As wildlife adapt to climate change, the chance to migrate becomes vital even to survival.

National parks and other large protected areas are part of the answer, but they’re not enough if wildlife can’t move between them, says Travis Belote, lead ecologist at the Wilderness Society.

“Nature needs to be able to shuffle around,” he says.

Enter the organization’s Wildness Index. It’s a national map that shows the parts of the country most touched by human activity as well as wilderness areas best suited for wildlife. Mr. Belote and his colleagues created the index by combining data on land use, population density, road location and size, water flows, and many other factors. It’s an important tool to help the nonprofit prioritize the locations it fights to protect.

In Idaho, for example, the nonprofit compares the index with information about known wildlife corridors and federal lands that are unprotected but meet the criteria for conservation designation. The project’s goal: determine which areas in the High Divide — a wild stretch that connects Greater Yellowstone with other protected areas — the charity should advocate to legally protect….(More)”

See also HOW NONPROFITS CAN PUT DATA TO USE

Selected Readings on Data and Humanitarian Response

Curated on Posted on by Stefaan Verhulst

By Prianka Srinivasan and Stefaan G. Verhulst *

The Living Library’s Selected Readings series seeks to build a knowledge base on innovative approaches for improving the effectiveness and legitimacy of governance. This curated and annotated collection of recommended works on the topic of data and humanitarian response was originally published in 2016.

Data, when used well in a trusted manner, allows humanitarian organizations to innovate how to respond to emergency events, including better coordination of post-disaster relief efforts, the ability to harness local knowledge to create more targeted relief strategies, and tools to predict and monitor disasters in real time. Consequently, in recent years both multinational groups and community-based advocates have begun to integrate data collection and evaluation strategies into their humanitarian operations, to better and more quickly respond to emergencies. However, this movement poses a number of challenges. Compared to the private sector, humanitarian organizations are often less equipped to successfully analyze and manage big data, which pose a number of risks related to the security of victims’ data. Furthermore, complex power dynamics which exist within humanitarian spaces may be further exacerbated through the introduction of new technologies and big data collection mechanisms. In the below we share:

  • Selected Reading List (summaries and hyperlinks)
  • Annotated Selected Reading List
  • Additional Readings

Selected Reading List  (summaries in alphabetical order)

Data and Humanitarian Response

Risks of Using Big Data in Humanitarian Context

Annotated Selected Reading List (in alphabetical order)

Karlsrud, John. “Peacekeeping 4.0: Harnessing the Potential of Big Data, Social Media, and Cyber Technologies.” Cyberspace and International Relations, 2013. http://bit.ly/235Qb3e

  • This chapter from the book “Cyberspace and International Relations” suggests that advances in big data give humanitarian organizations unprecedented opportunities to prevent and mitigate natural disasters and humanitarian crises. However, the sheer amount of unstructured data necessitates effective “data mining” strategies for multinational organizations to make the most use of this data.
  • By profiling some civil-society organizations who use big data in their peacekeeping efforts, Karlsrud suggests that these community-focused initiatives are leading the movement toward analyzing and using big data in countries vulnerable to crisis.
  • The chapter concludes by offering ten recommendations to UN peacekeeping forces to best realize the potential of big data and new technology in supporting their operations.

Mancini, Fancesco. “New Technology and the prevention of Violence and Conflict.” International Peace Institute, 2013. http://bit.ly/1ltLfNV

  • This report from the International Peace Institute looks at five case studies to assess how information and communications technologies (ICTs) can help prevent humanitarian conflicts and violence. Their findings suggest that context has a significant impact on the ability for these ICTs for conflict prevention, and any strategies must take into account the specific contingencies of the region to be successful.
  • The report suggests seven lessons gleaned from the five case studies:
    • New technologies are just one in a variety of tools to combat violence. Consequently, organizations must investigate a variety of complementary strategies to prevent conflicts, and not simply rely on ICTs.
    • Not every community or social group will have the same relationship to technology, and their ability to adopt new technologies are similarly influenced by their context. Therefore, a detailed needs assessment must take place before any new technologies are implemented.
    • New technologies may be co-opted by violent groups seeking to maintain conflict in the region. Consequently, humanitarian groups must be sensitive to existing political actors and be aware of possible negative consequences these new technologies may spark.
    • Local input is integral to support conflict prevention measures, and there exists need for collaboration and awareness-raising with communities to ensure new technologies are sustainable and effective.
    • Information shared between civil-society has more potential to develop early-warning systems. This horizontal distribution of information can also allow communities to maintain the accountability of local leaders.

Meier, Patrick. “Digital humanitarians: how big data is changing the face of humanitarian response.” Crc Press, 2015. http://amzn.to/1RQ4ozc

  • This book traces the emergence of “Digital Humanitarians”—people who harness new digital tools and technologies to support humanitarian action. Meier suggests that this has created a “nervous system” to connect people from disparate parts of the world, revolutionizing the way we respond to humanitarian crises.
  • Meier argues that such technology is reconfiguring the structure of the humanitarian space, where victims are not simply passive recipients of aid but can contribute with other global citizens. This in turn makes us more humane and engaged people.

Robertson, Andrew and Olson, Steve. “Using Data Sharing to Improve Coordination in Peacebuilding.” United States Institute for Peace, 2012. http://bit.ly/235QuLm

  • This report functions as an overview of a roundtable workshop on Technology, Science and Peace Building held at the United States Institute of Peace. The workshop aimed to investigate how data-sharing techniques can be developed for use in peace building or conflict management.
  • Four main themes emerged from discussions during the workshop:
    • “Data sharing requires working across a technology-culture divide”—Data sharing needs the foundation of a strong relationship, which can depend on sociocultural, rather than technological, factors.
    • “Information sharing requires building and maintaining trust”—These relationships are often built on trust, which can include both technological and social perspectives.
    • “Information sharing requires linking civilian-military policy discussions to technology”—Even when sophisticated data-sharing technologies exist, continuous engagement between different stakeholders is necessary. Therefore, procedures used to maintain civil-military engagement should be broadened to include technology.
    • “Collaboration software needs to be aligned with user needs”—technology providers need to keep in mind the needs of its users, in this case peacebuilders, in order to ensure sustainability.

United Nations Independent Expert Advisory Group on a Data Revolution for Sustainable Development. “A World That Counts, Mobilizing the Data Revolution.” 2014. https://bit.ly/2Cb3lXq

  • This report focuses on the potential benefits and risks data holds for sustainable development. Included in this is a strategic framework for using and managing data for humanitarian purposes. It describes a need for a multinational consensus to be developed to ensure data is shared effectively and efficiently.
  • It suggests that “people who are counted”—i.e., those who are included in data collection processes—have better development outcomes and a better chance for humanitarian response in emergency or conflict situations.

Katie Whipkey and Andrej Verity. “Guidance for Incorporating Big Data into Humanitarian Operations.” Digital Humanitarian Network, 2015. http://bit.ly/1Y2BMkQ

  • This report produced by the Digital Humanitarian Network provides an overview of big data, and how humanitarian organizations can integrate this technology into their humanitarian response. It primarily functions as a guide for organizations, and provides concise, brief outlines of what big data is, and how it can benefit humanitarian groups.
  • The report puts forward four main benefits acquired through the use of big data by humanitarian organizations: 1) the ability to leverage real-time information; 2) the ability to make more informed decisions; 3) the ability to learn new insights; 4) the ability for organizations to be more prepared.
  • It goes on to assess seven challenges big data poses for humanitarian organizations: 1) geography, and the unequal access to technology across regions; 2) the potential for user error when processing data; 3) limited technology; 4) questionable validity of data; 5) underdeveloped policies and ethics relating to data management; 6) limitations relating to staff knowledge.

Risks of Using Big Data in Humanitarian Context
Crawford, Kate, and Megan Finn. “The limits of crisis data: analytical and ethical challenges of using social and mobile data to understand disasters.” GeoJournal 80.4, 2015. http://bit.ly/1X0F7AI

  • Crawford & Finn present a critical analysis of the use of big data in disaster management, taking a more skeptical tone to the data revolution facing humanitarian response.
  • They argue that though social and mobile data analysis can yield important insights and tools in crisis events, it also presents a number of limitations which can lead to oversights being made by researchers or humanitarian response teams.
  • Crawford & Finn explore the ethical concerns the use of big data in disaster events introduces, including issues of power, privacy, and consent.
  • The paper concludes by recommending that critical data studies, such as those presented in the paper, be integrated into crisis event research in order to analyze some of the assumptions which underlie mobile and social data.

Jacobsen, Katja Lindskov (2010) Making design safe for citizens: A hidden history of humanitarian experimentation. Citizenship Studies 14.1: 89-103. http://bit.ly/1YaRTwG

  • This paper explores the phenomenon of “humanitarian experimentation,” where victims of disaster or conflict are the subjects of experiments to test the application of technologies before they are administered in greater civilian populations.
  • By analyzing the particular use of iris recognition technology during the repatriation of Afghan refugees to Pakistan in 2002 to 2007, Jacobsen suggests that this “humanitarian experimentation” compromises the security of already vulnerable refugees in order to better deliver biometric product to the rest of the world.

Responsible Data Forum. “Responsible Data Reflection Stories: An Overview.” http://bit.ly/1Rszrz1

  • This piece from the Responsible Data forum is primarily a compilation of “war stories” which follow some of the challenges in using big data for social good. By drawing on these crowdsourced cases, the Forum also presents an overview which makes key recommendations to overcome some of the challenges associated with big data in humanitarian organizations.
  • It finds that most of these challenges occur when organizations are ill-equipped to manage data and new technologies, or are unaware about how different groups interact in digital spaces in different ways.

Sandvik, Kristin Bergtora. “The humanitarian cyberspace: shrinking space or an expanding frontier?” Third World Quarterly 37:1, 17-32, 2016. http://bit.ly/1PIiACK

  • This paper analyzes the shift toward more technology-driven humanitarian work, where humanitarian work increasingly takes place online in cyberspace, reshaping the definition and application of aid. This has occurred along with what many suggest is a shrinking of the humanitarian space.
  • Sandvik provides three interpretations of this phenomena:
    • First, traditional threats remain in the humanitarian space, which are both modified and reinforced by technology.
    • Second, new threats are introduced by the increasing use of technology in humanitarianism, and consequently the humanitarian space may be broadening, not shrinking.
    • Finally, if the shrinking humanitarian space theory holds, cyberspace offers one example of this, where the increasing use of digital technology to manage disasters leads to a contraction of space through the proliferation of remote services.

Additional Readings on Data and Humanitarian Response

* Thanks to: Kristen B. Sandvik; Zara Rahman; Jennifer Schulte; Sean McDonald; Paul Currion; Dinorah Cantú-Pedraza and the Responsible Data Listserve for valuable input.

How to stop being so easily manipulated by misleading statistics

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Q&A by Akshat Rathi in Quartz: “There are three kinds of lies: Lies, damned lies, and statistics.” Few people know the struggle of correcting such lies better than David Spiegelhalter. Since 2007, he has been the Winton professor for the public understanding of risk (though he prefers “statistics” to “risk”) at the University of Cambridge.In a sunlit hotel room in Washington DC, Quartz caught up with Spiegelhalter recently to talk about his unique job. The conversation sprawled from the wisdom of eating bacon (would you swallow any other known carcinogen?), to the serious crime of manipulating charts, to the right way to talk about rare but scary diseases.

In a sunlit hotel room in Washington DC, Quartz caught up with Spiegelhalter recently to talk about his unique job. The conversation sprawled from the wisdom of eating bacon (would you swallow any other known carcinogen?), to the serious crime of manipulating charts, to the right way to talk about rare but scary diseases.

 When he isn’t fixing people’s misunderstandings of numbers, he works to communicate numbers better so that misunderstandings can be avoided from the beginning. The interview is edited and condensed for clarity….
What’s a recent example of misrepresentation of statistics that drove you bonkers?
I got very grumpy at an official graph of British teenage pregnancy rates that apparently showed they had declined to nearly zero. Until I realized that the bottom part of the axis had been cut off, which made it impossible to visualize the (very impressive) 50% reduction since 2000.You once said graphical representation of data does not always communicate what we think it communicates. What do you mean by that?
Graphs can be as manipulative as words. Using tricks such as cutting axes, rescaling things, changing data from positive to negative, etc. Sometimes putting zero on the y-axis is wrong. So to be sure that you are communicating the right things, you need to evaluate the message that people are taking away. There are no absolute rules. It all depends on what you want to communicate….

Poorly communicated risk can have a severe effect. For instance, the news story about the risk that pregnant women are exposing their unborn child to when they drink alcohol caused stress to one of our news editors who had consumed wine moderately through her pregnancy.

 I think it’s irresponsible to say there is a risk when they actually don’t know if there is one. There is scientific uncertainty about that.
  “‘Absence of evidence is not evidence of absence.’ I hate that phrase…It’s always used in a manipulative way.” In such situations of unknown risk, there is a phrase that is often used: “Absence of evidence is not evidence of absence.” I hate that phrase. I get so angry when people use that phrase. It’s always used in a manipulative way. I say to them that it’s not evidence of absence, but if you’ve looked hard enough you’ll see that most of the time the evidence shows a very small effect, if at all.

So on the risks of drinking alcohol while being pregnant, the UK’s health authority said that as a precautionary step it’s better not to drink. That’s fair enough. This honesty is important. To say that we don’t definitely know if drinking is harmful, but to be safe we say you shouldn’t. That’s treating people as adults and allowing them to use their own judgement.

Science is a bigger and bigger part of our lives. What is the limitation in science journalism right now and how can we improve it?...(More)

Crowdsourced Health

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crowdsourcedhealthBook by Elad Yom-Tov: “Most of us have gone online to search for information about health. What are the symptoms of a migraine? How effective is this drug? Where can I find more resources for cancer patients? Could I have an STD? Am I fat? A Pew survey reports more than 80 percent of American Internet users have logged on to ask questions like these. But what if the digital traces left by our searches could show doctors and medical researchers something new and interesting? What if the data generated by our searches could reveal information about health that would be difficult to gather in other ways? In this book, Elad Yom-Tov argues that Internet data could change the way medical research is done, supplementing traditional tools to provide insights not otherwise available. He describes how studies of Internet searches have, among other things, already helped researchers track to side effects of prescription drugs, to understand the information needs of cancer patients and their families, and to recognize some of the causes of anorexia.

Yom-Tov shows that the information collected can benefit humanity without sacrificing individual privacy. He explains why people go to the Internet with health questions; for one thing, it seems to be a safe place to ask anonymously about such matters as obesity, sex, and pregnancy. He describes in detrimental effects of “pro-anorexia” online content; tells how computer scientists can scour search engine data to improve public health by, for example, identifying risk factors for disease and centers of contagion; and tells how analyses of how people deal with upsetting diagnoses help doctors to treat patients and patients to understand their conditions….(More)

“Big data” and “open data”: What kind of access should researchers enjoy?

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Paper by Gilles Chatellier, Vincent Varlet, and Corinne Blachier-Poisson in Thérapie: “The healthcare sector is currently facing a new paradigm, the explosion of “big data”. Coupled with advances in computer technology, the field of “big data” appears promising, allowing us to better understand the natural history of diseases, to follow-up new technologies (devices, drugs) implementation and to participate in precision medicine, etc. Data sources are multiple (medical and administrative data, electronic medical records, data from rapidly developing technologies such as DNA sequencing, connected devices, etc.) and heterogeneous while their use requires complex methods for accurate analysis. Moreover, faced with this new paradigm, we must determine who could (or should) have access to which data, how to combine collective interest and protection of personal data and how to finance in the long-term both operating costs and databases interrogation. This article analyses the opportunities and challenges related to the use of open and/or “big data”, … (More)”

On-demand service could be Uber for blood collection

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Springwise: Collecting blood for clinical and medical testing can be an arduous process, involving lots of travel, with the added annoyance of patients not turning up to appointments, and time wasted with doctors and phlebotomists.

But now a new phlebotomy service, Iggbo, is looking to change that. Blood collectors can become a freelancer with the new on-demand app; rather than employing a full-time phlebotomist, doctors can use the app to employ a freelancer who is paid per donation collected. The phlebotomists can collect donations at home, rather than having patients wait around for someone to take their blood.

Physicians can book clinical blood donations and Iggbo sends out the request via its smartphone app to its freelance phlebotomists. Iggbo also sends a number of reminders using text and email to ensure patients remember their appointments, and helps to book a new phlebotomist if something falls through.

The app even features an Uber-like ratings system, and Iggbo says it carefully vets all its collectors to ensure the service is safe and efficient. The company says the service will improve the efficiency of the healthcare system for blood testing and collection, and in doing so reduce overall costs….(More)”

States’ using iwaspoisoned.com for outbreak alerts

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Dan Flynn at Food Safety News: “The crowdsourcing site iwaspoisoned.com has collected thousands of reports of foodborne illnesses from individuals across the United States since 2009 and is expanding with a custom alert service for state health departments.

“There are now 26 states signed up, allowing government (health) officials and epidemiologists to receive real time, customized alerts for reported foodborne illness incidents,” said iwaspoisoned.com founder Patrick Quade.
Quade said he wanted to make iwaspoisoned.com data more accessible to health departments and experts in each state.

“This real time information provides a wider range of information data to help local agencies better manage food illness outbreaks,” he said. “It also supplements existing reporting channels and serves to corroborate their own reporting systems.”

The Florida Department of Health, Food and Waterborne Disease Program (FWDP) began receiving iwaspoisoned.com alerts beginning in December 2015.

“The FWDP has had an online complaint form for individuals to report food and waterborne illnesses,” a spokesman said. “However, the program has been looking for ways to expand their reach to ensure they are investigating all incidents. Partnering with iwaspoisoned.com was a logical choice for this expansion.”…

Quade established iwaspoisoned.com in New York City seven years ago to give people a place to report their experiences of being sickened by restaurant food. It gives such people a place to report the restaurants, locations, symptoms and other details and permits others to comment on the report….

The crowdsourcing site has played an increasing role in recent nationally known outbreaks, including those associated with Chipotle Mexican Grill in the last half of 2015. For example, CBS News in Los Angeles first reported on the Simi Valley, Calif., norovirus outbreak after noticing that about a dozen Chipotle customers had logged their illness reports on iwaspoisoned.com.

Eventually, health officials confirmed at least 234 norovirus illnesses associated with a Chipotle location in Simi Valley…(More)”