OpenFDA: an innovative platform providing access to a wealth of FDA’s publicly available data

Curated on Posted on by Stefaan Verhulst

Paper by Taha A Kass-Hout et al in JAMIA: “The objective of openFDA is to facilitate access and use of big important Food and Drug Administration public datasets by developers, researchers, and the public through harmonization of data across disparate FDA datasets provided via application programming interfaces (APIs).

Materials and Methods: Using cutting-edge technologies deployed on FDA’s new public cloud computing infrastructure, openFDA provides open data for easier, faster (over 300 requests per second per process), and better access to FDA datasets; open source code and documentation shared on GitHub for open community contributions of examples, apps and ideas; and infrastructure that can be adopted for other public health big data challenges.

Results:Since its launch on June 2, 2014, openFDA has developed four APIs for drug and device adverse events, recall information for all FDA-regulated products, and drug labeling. There have been more than 20 million API calls (more than half from outside the United States), 6000 registered users, 20,000 connected Internet Protocol addresses, and dozens of new software (mobile or web) apps developed. A case study demonstrates a use of openFDA data to understand an apparent association of a drug with an adverse event. Conclusion With easier and faster access to these datasets, consumers worldwide can learn more about FDA-regulated products

Conclusion: With easier and faster access to these datasets, consumers worldwide can learn more about FDA-regulated products…(More)”

Five Studies: How Behavioral Science Can Help in International Development

Curated on Posted on by Stefaan Verhulst

 in Pacific Standard: “In 2012, there were 896 million people around the world—12.7 percent of the global population—living on less than two dollars a day. The World Food Programestimates that 795 million people worldwide don’t have enough food to “lead a healthy life”; 25 percent of people living in Sub-Saharan Africa are undernourished. Over three million children die every year thanks to poor nutrition, and hunger is the leading cause of death worldwide. In 2012, just three preventable diseases (pneumonia, diarrhea, and malaria) killed 4,600 children every day.

Last month, the World Bank announced the launch of the Global Insights Initiative (GINI). The initiative, which follows in the footsteps of so-called “nudge units” in the United Kingdom and United States, is the Bank’s effort to incorporate insights from the field of behavioral science into the design of international development programs; too often, those programs failed to account for how people behave in the real world. Development policy, according to the Bank’s 2015 World Development Report, is overdue for a “redesign based on careful consideration of human factors.” Researchers have applauded the announcement, but it raises an interesting question: What can nudges really accomplish in the face of the developing world’s overwhelming poverty and health-care deficits?

In fact, researchers have found that instituting small program changes, informed by a better understanding of people’s motivations and limitations, can have big effects on everything from savings rates to vaccination rates to risky sexual behavior. Here are five studies that demonstrate the benefits of bringing empirical social science into the developing world….(More)”

Tinned food donations reduce parking fines

Curated on Posted on by Stefaan Verhulst

Springwise: “The Food For Fines scheme enables Lexington residents to trade cans of food for a reduction on their unpaid parking ticket fine. In 2014, 14 percent of US households had unstable food resources, so it is no wonder that we have seen a number of initiatives that help distribute food among the hungry. In Minneapolis, for example, the police department are distributing healthy food boxes with nutrition advice during their patrol. Now, the Lexington Parking Authority has launched the Food For Finesscheme, during which residents can trade cans of food for a reduction on their unpaid parking ticket fine.

The drive is being run in collaboration with local food bank God’s Pantry. To participate, anyone who has an outstanding or past parking citation from LEXPARK or the Lexington Police Department, can receive a USD 15 reduction in exchange for 10 cans of food….(More)”

‘Refoodgee’ App Connects Berlin Locals With Refugees Through Food

Curated on Posted on by Stefaan Verhulst

Alexandra Ma at HuffPost: “A group of German tech entrepreneurs wants to help refugees in their country by providing them with an enriching way to receive meals and make connections to their new communities.

Five members of Berlin-based startup Memorado created “Refoodgee,” an app that helps pair newly arrived refugees with the city’s locals based on food preferences and shared languages.

The Memorado team built the app during #HackWeek15, a hackathon hosted by the startup that ran from Sept. 28 to Oct. 1 in Werbellinsee, Germany. The conference was focused on creating apps to help refugees entering the country with aspects of their daily lives, and “Refoodgee” was one of the products that came out of the event.

<span class='image-component__caption' itemprop="caption">The "Refoodgee" app helps connect refugees in Berlin to the city's locals.</span>
MEMORADO The “Refoodgee” app helps connect refugees in Berlin to the city’s locals.

To use the app, refugees and locals can sign up for a free account as either a dinner guest or host. They then provide information including their countries of origin, languages spoken and preferred cuisine. Locals can then invite refugees to a meal, which the refugees can either accept or decline…

“Refoodgee” is also just one of many efforts to help newcomers integrate into German society through technology. A Berlin-based nonprofit called “Refugees on Rails” is gearing up to teach refugees how to code in order to help them find jobs at European technology firms. And last month, online academic institution Kiron University also started enrolling refugee students in free, three-year university-level courses that will culminate in a degree….(More)”

Beyond Distrust: How Americans View Their Government

Curated on Posted on by Stefaan Verhulst

Overview - 1Pew Research Center: “A year ahead of the presidential election, the American public is deeply cynical about government, politics and the nation’s elected leaders in a way that has become quite familiar.

Currently, just 19% say they can trust the government always or most of the time,among the lowest levels in the past half-century. Only 20% would describe government programs as being well-run. And elected officials are held in such low regard that 55% of the public says “ordinary Americans” would do a better job of solving national problems.

Yet at the same time, most Americans have a lengthy to-do list for this object of their frustration: Majorities want the federal government to have a major role in addressing issues ranging from terrorism and disaster response to education and the environment.

And most Americans like the way the federal government handles many of these same issues, though they are broadly critical of its handling of others – especially poverty and immigration.

A new national survey by Pew Research Center, based on more than 6,000 interviews conducted between August 27 and October 4, 2015, finds that public attitudes about government and politics defy easy categorization. The study builds upon previous reports about the government’s role and performance in 2010 and 1998. This report was made possible by The Pew Charitable Trusts, which received support for the survey from The William and Flora Hewlett Foundation.

The partisan divide over the size and scope of government remains as wide as ever: Support for smaller government endures as a Republican touchstone. Fully 80% of Republicans and Republican-leaning independents say they prefer a smaller government with fewer services, compared with just 31% of Democrats and Democratic leaners.

Yet both Republicans and Democrats favor significant government involvement on an array of specific issues. Among the public overall, majorities say the federal government should have a major role in dealing with 12 of 13 issues included in the survey, all except advancing space exploration.

There is bipartisan agreement that the federal government should play a major role in dealing with terrorism, natural disasters, food and medicine safety, and roads and infrastructure. And while the presidential campaign has exposed sharp partisan divisions over immigration policy, large majorities of both Republicans (85%) and Democrats (80%) say the government should have a major role in managing the immigration system.

But the partisan differences over government’s appropriate role are revealing – with the widest gaps on several issues relating to the social safety net….(More)

Looking for Open Data from a different country? Try the European Data portal

Curated on Posted on by Stefaan Verhulst
Wendy Carrara in DAE blog: “The Open Data movement is reaching all countries in Europe. Data Portals give you access to re-usable government information. But have you ever tried to find Open Data from another country whose language you do not speak? Or have you tried to see whether data from one country exist also in a similar way in another? The European Data Portal that we just launched can help you….

The European Data Portal project main work streams is the development of a new pan-European open data infrastructure. Its goal is to be a gateway offering access to data published by administrations in countries across Europe, from the EU and beyond.
The portal is launched during the European Data Forum in Luxembourg.

Additionally we will support public administrations in publishing more data as open data and have targeted actions to stimulate re-use. By taking a look at the data released by other countries and made available on the European Data Portal, governments can also be inspired to publish new data sets they had not though about in the first place.

The re-use of Open Data will further boost the economy. The benefits of Open Data are diverse and range from improved performance of public administrations and economic growth in the private sector to wider social welfare. The economic studyconducted by the European Data Portal team estimates that between 2016 and 2020, the market size of Open Data is expected to increase by 36.9% to a value of 75.7 bn EUR in 2020.

For data to be re-used, it has to be accessible

Currently, the portal includes over 240.000 datasets from 34 European countries. Information about the data available is structured into thirteen different categories ranging from agriculture to transport, including science, justice, health and so on. This enables you to quickly browse through categories and feel inspired by the data made accessible….(More)”

Building Trust and Protecting Privacy: Progress on the President’s Precision Medicine Initiative

Curated on Posted on by Stefaan Verhulst

The White House: “Today, the White House is releasing the Privacy and Trust Principles for the President’s Precision Medicine Initiative (PMI). These principles are a foundation for protecting participant privacy and building trust in activities within PMI.

PMI is a bold new research effort to transform how we characterize health and treat disease. PMI will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients. The initiative includes development of a new voluntary research cohort by the National Institutes of Health (NIH), a novel regulatory approach to genomic technologies by the Food and Drug Administration, and new cancer clinical trials by the National Cancer Institute at NIH.  In addition, PMI includes aligned efforts by the Federal government and private sector collaborators to pioneer a new approach for health research and healthcare delivery that prioritizes patient empowerment through access to information and policies that enable safe, effective, and innovative technologies to be tested and made available to the public.

Following President Obama’s launch of PMI in January 2015, the White House Office of Science and Technology Policy worked with an interagency group to develop the Privacy and Trust Principles that will guide the Precision Medicine effort. The White House convened experts from within and outside of government over the course of many months to discuss their individual viewpoints on the unique privacy challenges associated with large-scale health data collection, analysis, and sharing. This group reviewed the bioethics literature, analyzed privacy policies for large biobanks and research cohorts, and released a draft set of Principles for public comment in July 2015…..

The Privacy and Trust Principles are organized into 6 broad categories:

  1. Governance that is inclusive, collaborative, and adaptable;
  2. Transparency to participants and the public;
  3. Respecting participant preferences;
  4. Empowering participants through access to information;
  5. Ensuring appropriate data sharing, access, and use;
  6. Maintaining data quality and integrity….(More)”

Technology is a new kind of lifeline for refugees

Curated on Posted on by Stefaan Verhulst

Marketplace: “Imagine you’re a refugee leaving home for good. You’ll need help. But what you ask for today is much different than it would have been just 10 years ago.

“What people are demanding, more and more, is not classic food, shelter, water, healthcare, but they demand wifi,” said Melita Šunjić, a spokesperson for the United Nations High Commissioner for Refugees.

Šunjić began her work with Syrian refugees in camps in Amman, Jordan. Many were from rural areas with basic cell phones.

“The refugees we’re looking at now, who are coming to Europe – this is a completely different story,” Šunjić said. “They are middle class, urban people. Practically each family has at least one smart phone. We calculated that in each group of 20, they would have three smart phones.”

Refugees use their phones to call home and to map their routes. Even smugglers have their own Facebook pages.

“I don’t remember a crisis or refugee group where modern technology played such a role,” Šunjić said.

As refugees from Syria continue to flow into Europe, aid organizations are gearing up for what promises to be a difficult winter.

Emily Eros, ‎a GIS mapping officer with the American Red Cross, said her organization is working on the basics like providing food, water and shelter, but it’s also helping refugees stay connected. “It’s a little bit difficult because it’s not just a matter of getting a wifi station up, it’s also a matter of having someone there who’s able to fix it if something goes wrong,” she said. …(More)”

Open government: a new paradigm in social change?

Curated on Posted on by Stefaan Verhulst

Rosie Williams: In a recent speech to the Australian and New Zealand School of Government (ANSOG) annual conference, technology journalist and academic Suelette Drefyus explained the growing ‘information asymmetry’ that characterises the current-day relationship between government and citizenry.

According to Dreyfus:

‘Big Data makes government very powerful in its relationship with the citizen. This is even more so with the rise of intelligent systems, software that increasingly trawls, matches and analyses that Big Data. And it is moving toward making more decisions once made by human beings.’

The role of technology in the delivery of government services gives much food for thought in terms of both its implications for potential good and the potential dangers it may pose. The concept of open government is an important one for the future of policy and democracy in Australia. Open government has at its core a recognition that the world has changed, that the ways people engage and who they engage with has transformed in ways that governments around the world must respond to in both technological and policy terms.

As described in the ANSOG speech, the change within government in how it uses technology is well underway, however in many regards we are at the very beginning of understanding and implementing the potential of data and technology in providing solutions to many of our shared problems. Australia’s pending membership of the Open Government Partnership is integral to how Australia responds to these challenges. Membership of the multi-lateral partnership requires the Australian government to create a National Action Plan based on consultation and demonstrate our credentials in the areas of Fiscal Transparency, Access to Information, Income and Asset Disclosure, and Citizen Engagement.

What are the implications of the National Action Plan for policy consultation formulation, implementation and evaluation? In relative terms, Australia’s history with open government is fairly recent. Policies on open data have seen the roll out of data.gov.au – a repository of data published by government agencies and made available for re-use in efforts such as the author’s own financial transparency site OpenAus.

In this way citizen activity and government come together for the purposes of achieving open government. These efforts express a new paradigm in government and activism where the responsibility for solving the problems of democracy are shared between government and the people as opposed to the government ‘solving’ the problems of a passive, receptive citizenry.

As the famous whistle-blowers have shown, citizens are no longer passive but this new capability also requires a consciousness of the responsibilities and accountability that go along with the powers newly developed by citizen activists through technological change.

The opening of data and communication channels in the formulation of public policy provides a way forward to create both a better informed citizenry and also better informed policy evaluation. When new standards of transparency are applied to wicked problems what shortcomings does this highlight?

This question was tested with my recent request for a basic fact missing from relevant government research and reviews but key to social issues of homelessness and domestic violence….(More)”

New Human Need Index fills a data void to help those in need

Curated on Posted on by Stefaan Verhulst

Scott W. Allard at Brookings: “My 2009 book, “Out of Reach,” examined why it can be hard for poor families to get help from the safety net. One critical barrier is the lack of information about local program resources and nonprofit social service organizations. Good information is key to finding help, but also to important if we are to target resources effectively and assess if program investments were successful.

As I prepared data for the book in 2005, my research team struggled to compile useful information about services and programs in the three major metro areas at the center of the study. We grappled with out-of-date print directories, incomplete online listings, bad addresses, disconnected phone numbers, and inaccurate information about the availability of services. It wasn’t clear families experiencing hardship could easily find the help they needed. It also wasn’t clear how potential volunteers or donors could know where to direct their energies, or whether communities could know whether they were deploying adequate and relevant safety net resources. In the book’s conclusion, however, I was optimistic things would get better. A mix of emerging technology, big data systems, and a generation of young entrepreneurs would certainly close these information gaps over the next several years.

Recently, I embarked upon an effort to again identify the social service organizations operating in one of the book’s original study sites. To my surprise, the work was much harder this time around. Print directories are artifacts of the past. Online referral tools provided only spotty coverage. Addresses and service information can still be quite out of date. In many local communities, it felt as if there was less information available now than a decade ago.

Lack of data about local safety net programs, particularly nonprofit organizations, has long been a problem for scholars, community advocates, nonprofit leaders, and philanthropists. Data about providers and populations served are expensive to collect, update, and disseminate. There are no easy ways to monetize data resources or find regular revenue streams to support data work. There are legal obstacles and important concerns about confidentiality. Many organizations don’t have the resources to do much analytic or learning work.

The result is striking. We spend tens of billions of dollars on social services for low-income households each year, but we have only the vaguest ideas of where those dollars go, what impact they have, and where unmet needs exist.

Into this information void steps the Salvation Army and the Lilly Family School of Philanthropy at Indiana University with a possible path forward. Working together and with an advisory board of scholars, the Salvation Army and the Lilly School have created a real-time Human Needs Index drawn from service provision tracking systems maintained by more than 7,000 Salvation Army sites nationwide. The index provides useful insight into consumption of an array of emergency services (e.g., food, shelter, clothing) at a given place and point in time across the entire country…(More)”