health

Data for Development

Curated on May 10, 2015August 3, 2018 by Stefaan Verhulst

Jeffrey D. Sachs at Project Syndicate: “The data revolution is rapidly transforming every part of society. Elections are managed with biometrics, forests are monitored by satellite imagery, banking has migrated from branch offices to smartphones, and medical x-rays are examined halfway around the world. With a bit of investment and foresight, spelled out in a new report, prepared by the UN Sustainable Development Solutions Network (SDSN), on Data for Development, the data revolution can drive a sustainable development revolution, and accelerate progress toward ending poverty, promoting social inclusion, and protecting the environment.
The world’s governments will adopt the new Sustainable Development Goals (SDGs) at a special United Nations summit on September 25. The occasion will likely be the largest gathering of world leaders in history, as some 170 heads of state and government adopt shared goals that will guide global development efforts until 2030. Of course, goals are easier to adopt than to achieve. So we will need new tools, including new data systems, to turn the SDGs into reality by 2030. In developing these new data systems, governments, businesses, and civil-society groups should promote four distinct purposes.

The first, and most important, is data for service delivery. The data revolution gives governments and businesses new and greatly improved ways to deliver services, fight corruption, cut red tape, and guarantee access in previously isolated places. Information technology is already revolutionizing the delivery of health care, education, governance, infrastructure (for example, prepaid electricity), banking, emergency response, and much more.
The second purpose is data for public management. Officials can now maintain real-time dashboards informing them of the current state of government facilities, transport networks, emergency relief operations, public health surveillance, violent crimes, and much more. Citizen feedback can also improve functioning, such as by crowd-sourcing traffic information from drivers. Geographic information systems (GIS) allow for real-time monitoring across local governments and districts in far-flung regions.
The third purpose is data for accountability of governments and businesses. It is a truism that government bureaucracies cut corners, hide gaps in service delivery, exaggerate performance, or, in the worst cases, simply steal when they can get away with it. Many businesses are no better. The data revolution can help to ensure that verifiable data are accessible to the general public and the intended recipients of public and private services. When services do not arrive on schedule (owing to, say, a bottleneck in construction or corruption in the supply chain), the data system will enable the public to pinpoint problems and hold governments and businesses to account.
Finally, the data revolution should enable the public to know whether or not a global goal or target has actually been achieved. The Millennium Development Goals, which were set in the year 2000, established quantitative targets for the year 2015. But, although we are now in the MDGs’ final year, we still lack precise knowledge of whether certain MDG targets have been achieved, owing to the absence of high-quality, timely data. Some of the most important MDG targets are reported with a lag of several years. The World Bank, for example, has not published detailed poverty data since 2010…..(More)”

Enhancing Social Accountability Through ICT: Success Factors and Challenges

Curated on May 9, 2015August 3, 2018 by Stefaan Verhulst

Wakabi, Wairagala and Grönlund, Åke for the International Conference for E-Democracy and Open Government 2015: “This paper examines the state of citizen participation in public accountability processes via Information and Communication Technologies (ICT). It draws on three projects that use ICT to report public service delivery failures in Uganda, mainly in the education, public health and the roads sectors. While presenting common factors hampering meaningful use of ICT for citizens’ monitoring of public services and eParticipation in general, the paper studies the factors that enabled successful whistle blowing using toll free calling, blogging, radio talk shows, SMS texting, and e-mailing. The paper displays examples of the positive impacts of whistle-blowing mechanisms and draws up a list of success factors applicable to these projects. It also outlines common challenges and drawbacks to initiatives that use ICT to enable citizen participation in social accountability. The paper provides pathways that could give ICT-for-participation and for-accountability initiatives in countries with characteristics similar to Uganda a good chance of achieving success. While focusing on Uganda, the paper may be of practical value to policy makers, development practitioners and academics in countries with similar socio-economic standings….(More)”

Worldwide accessibility map is crowdsourced by users

Curated on May 6, 2015October 23, 2018 by Stefaan Verhulst

Springwise: “There are a growing number of apps such as Handimap and Blue Badge Style which offer city guides for users in wheelchairs — informing them which venues are accessible and which do not have disabled facilities. AXS Map does the same, but utilizes crowdsourced information to cover a much wider range of places and venues.

AXS Map is a free app, hailing from Canada, which aims to make the world a more accessible place for those with mobility problems. Users can access the platform via smartphone or desktop: they can browse any given area for accessible restaurants, shops, public restrooms or anything else via the searchable map. The database is made up of crowdsourced reviews submitted by the users themselves and includes ratings and information about entryways and restrooms.

The organization also host Mapathons, which aim to get new communities in towns and cities which are not yet covered involved: participants are encouraged to form teams and compete to see who can rate the most venues in a given area. Mapathons have taken place all over the USA and there are upcoming events in New York and Istanbul. Where should the AXS Mappers head next?” (More: AXS Map)

Apple Has Plans for Your DNA

Curated on May 6, 2015October 24, 2018 by Stefaan Verhulst

Antonio Regalado at MIT Technology Review: “…Apple is collaborating with U.S. researchers to launch apps that would offer some iPhone owners the chance to get their DNA tested, many of them for the first time, according to people familiar with the plans.

The apps are based on ResearchKit, a software platform Apple introduced in March that helps hospitals or scientists run medical studies on iPhones by collecting data from the devices’ sensors or through surveys.

The first five ResearchKit apps, including one called mPower that tracks symptoms of Parkinson’s disease, quickly recruited thousands of participants in a few days, demonstrating the reach of Apple’s platform.

“Apple launched ResearchKit and got a fantastic response. The obvious next thing is to collect DNA,” says Gholson Lyon, a geneticist at Cold Spring Harbor Laboratory, who isn’t involved with the studies.

Nudging iPhone owners to submit DNA samples to researchers would thrust Apple’s devices into the center of a widening battle for genetic information. Universities, large technology companies like Google (see “Google Wants to Store Your Genome”), direct-to-consumer labs, and even the U.S. government (see “U.S. to Develop DNA Study of One Million People”) are all trying to amass mega-databases of gene information to uncover clues about the causes of disease (see “Internet of DNA”).

In two initial studies planned, Apple isn’t going to directly collect or test DNA itself. That will be done by academic partners. The data would be maintained by scientists in a computing cloud, but certain findings could appear directly on consumers’ iPhones as well. Eventually, it’s even possible consumers might swipe to share “my genes” as easily as they do their location….(More)”

Global Diseases, Collective Solutions

Curated on May 5, 2015August 3, 2018 by Stefaan Verhulst

New paper by Ben Ramalingam: “Environmental disruption, mass urbanization and the runaway globalization of trade and transport have created ideal conditions for infectious diseases to emerge and spread around the world. Rapid spill-overs from local into regional and global crises reveal major gaps in the global system for dealing with infectious diseases.

A number of Global Solution Networks have emerged that address failures of systems, of institutions and of markets. At their most ambitious, they aim to change the rules of the global health game—opening up governance structures, sharing knowledge and science, developing new products, creating markets—all with the ultimate aim of preventing and treating diseases, and saving lives.

These networks have emerged in an ad-hoc and opportunistic fashion. More strategic thinking and investment is needed to build networking competencies and to identify opportunities for international institutions to best leverage new forms of collaboration and partnership. (Read the paper here).”

Moving Cities Beyond Performance Measurement

Curated on May 5, 2015August 3, 2018 by Stefaan Verhulst

Pew Charitable Trust: “The recent explosion in the availability of data is changing the way Americans make decisions and do business in fields as diverse as sports, public health, shopping, and politics. The business of government is no exception. At the local level, new methods of collecting and analyzing information have varied and far-reaching effects on the ability of leaders to understand and work within their fiscal constraints and meet residents’ needs.

Local governments have used performance measurement—collecting and studying data with the aim of improving operating efficiency and effectiveness—for decades, but today’s cities have access to a wealth of other data. Those on the cutting edge are using these data with new analytical tools in innovative ways that often reach beyond the conventional definition of performance measurement. For example, theNew York City Fire Department compiles information from various city departments about building characteristics—such as construction material, fireproofing, height, date of construction, and last inspection date—to prioritize buildings for inspections.Boston uses a cellphone app, called Street Bump, to help detect potholes using the accelerometers built into cellphones.

What’s new, beyond the sheer volume of data, to help governments improve?

Local governments previously examined statistics only within individual departments. Today, they are gleaning new insights by combining data across agencies.
Government officials typically reviewed performance statistics only periodically—annually, semiannually, or quarterly. Now they often have access to usable data in real time, allowing them to be more responsive and efficient.
In the past, cities primarily used analytics to understand past events. Today, some are exploring predictive analytics, using data to anticipate occurrences and outcomes….(More)”

An Unexpected Value Coming From the Happy Meal

Curated on April 30, 2015May 29, 2019 by Stefaan Verhulst

Gregory Ferenstein in Pacific Standard: “Improbable as it sounds, McDonald’s may hold the key to getting America’s youth to eat healthier.

A team of medical researchers led by Dr. Robert Siegel took a strategy from the Happy Meal playbook, pairing healthy lunch options at public schools with smiley faces and a toy. The result were extraordinary: voluntary healthy meal purchases quadrupled.

“A two-tiered approach of Emoticons followed by small prizes as an incentive for healthful food selections is very effective in increasing plain white milk, fruit and vegetable selection,” the researchers write in a study presented this week at the annual Pediatric Academic Societies meeting, in San Diego.

Indeed, the popularization of emoticons has been co-opted by researchers lately to see if the colorful balls of happiness can be utilized for socially beneficial ends. One 2014 study found that “emolabeling” could be a major factor in health choice selection by both pre-literate and young children….

This latest research delves further into the power of emoticons in two significant ways. First, the study was tested in some of the most troubled school neighborhoods. (Siegel estimates that a significant portion of the families were either poor or homeless.) Second, knowing that smiling faces alone may not be enough to change behavior, after three months of using emoticons, the team added in a toy to further entice healthy meals.

With emoticons alone, the team found that chocolate milk sales at the school took a noticeable dip, from 87 percent of total milk sales to 78 percent. Later, entire meals known as “Power Plates” were added and paired with a toy. These healthy lunches (with whole grains and vegetables) spiked from less than 10 percent to 42 percent with the introduction of emoticons and a toy.

Interestingly enough, after the toys were taken away, the children continued to select healthy meals. That’s because external rewards can have odd effects on behavior….(More)

Wicked Opportunities

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

Essay by William D. Eggers & Anna Muoio: “Wicked problems”—ranging from malaria to dwindling water supplies—are being reframed as “wicked opportunities” and tackled by networks of nongovernmental organizations, social entrepreneurs, governments, and big businesses.

As a killer disease, malaria is the world’s third biggest, after only HIV/AIDS and tuberculosis. In 2013, an estimated 584,000 people died of it—90 percent of these deaths in Africa, mostly among children under five years of age.¹ And because 3.2 billion people—almost half the world’s population—live in regions where malaria spreads easily, it is very hard to fight.² Scores of organizations are embroiled in the complex search for solutions, sometimes pursuing conflicting priorities, always competing for scarce resources. Despite the daunting challenges, here’s how Bill Gates, who has already spent more than $2 billion of Gates Foundation money on the problem, characterizes the situation: “This is one of the greatest opportunities the global health world has ever had.”³

Opportunity? It’s a surprising word even for an optimistic mega-philanthropist to describe a scourge that people have been trying to eliminate, unsuccessfully, for hundreds of years. It’s also, however, a fair statement about what is possible in the 21^st century. We’re seeing a trend by which many kinds of “wicked problems”—complex, dynamic, and seemingly intractable social challenges—are being reframed and attacked with renewed vigor through solution ecosystems. Unprecedented networks of non-governmental organizations (NGOs), social entrepreneurs, health professionals, governments, and international development institutions—and yes, businesses—are coalescing around them, and recasting them as wicked opportunities….(More)”

Preparing for Responsible Sharing of Clinical Trial Data

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

Paper by Michelle M. Mello et al in the New England Journal of Medicine: “Data from clinical trials, including participant-level data, are being shared by sponsors and investigators more widely than ever before. Some sponsors have voluntarily offered data to researchers, some journals now require authors to agree to share the data underlying the studies they publish, the Office of Science and Technology Policy has directed federal agencies to expand public access to data from federally funded projects, and the European Medicines Agency (EMA) and U.S. Food and Drug Administration (FDA) have proposed the expansion of access to data submitted in regulatory applications. Sharing participant-level data may bring exciting benefits for scientific research and public health but may also have unintended consequences. Thus, expanded data sharing must be pursued thoughtfully.

We provide a suggested framework for broad sharing of participant-level data from clinical trials and related technical documents. After reviewing current data-sharing initiatives, potential benefits and risks, and legal and regulatory implications, we propose potential governing principles and key features for a system of expanded access to participant-level data and evaluate several governance structures….(More)”