Open Data and Clinical Trials


Editorial by Jeffrey M. Drazen, M.D at NEJM.org :”In the fall of 2013, the Institute of Medicine (IOM) convened a committee, on which I serve, to examine the sharing of data in the setting of clinical trials. The committee is charged with reviewing current practices on data sharing in the context of randomized, controlled trials and with making recommendations for future data-sharing standards. Over the past few months, the committee has prepared a draft report that reviews current practices on data sharing and lays out a number of potential data-sharing models. Full details regarding the committee’s charge and the interim report are available at www.iom.edu/activities/research/sharingclinicaltrialdata.aspx….
Open-data advocates argue that all the study data should be available to anyone at the time the first report is published or even earlier. Others argue that to maintain an incentive for researchers to pursue clinical investigations and to give those who gathered the data a chance to prepare and publish further reports, there should be a period of some specified length during which the data gatherers would have exclusive access to the information. Since these researchers could always agree to collaborate with others who were not involved in the study in order to use the data to help answer a scientific question, the period of exclusivity would really apply only to noncollaborative use of the data. That is, there would be a defined period during which the data would not be available to those who wanted to perform their own analyses and draw conclusions that could, for example, provide them with a scientific or commercial competitive advantage over the researchers who had originally gathered the data or allow them to derive conclusions that are potentially at odds with those drawn in the original publication.
As members of a community that either produces or uses data, what approach do you think serves our community best? There is no need to reply to the Journal, but please read the interim report and let the IOM know how you feel about this and the many other critical issues related to data sharing that are reviewed in the document. The IOM is collecting comments until March 24, 2014, at www8.nationalacademies.org/cp/projectview.aspx?key=49578.”

How Government Can Make Open Data Work


Joel Gurin in Information Week: “At the GovLab at New York University, where I am senior adviser, we’re taking a different approach than McKinsey’s to understand the evolving value of government open data: We’re studying open data companies from the ground up. I’m now leading the GovLab’s Open Data 500 project, funded by the John S. and James L. Knight Foundation, to identify and examine 500 American companies that use government open data as a key business resource.
Our preliminary results show that government open data is fueling companies both large and small, across the country, and in many sectors of the economy, including health, finance, education, energy, and more. But it’s not always easy to use this resource. Companies that use government open data tell us it is often incomplete, inaccurate, or trapped in hard-to-use systems and formats.
It will take a thorough and extended effort to make government data truly useful. Based on what we are hearing and the research I did for my book, here are some of the most important steps the federal government can take, starting now, to make it easier for companies to add economic value to the government’s data.
1. Improve data quality
The Open Data Policy not only directs federal agencies to release more open data; it also requires them to release information about data quality. Agencies will have to begin improving the quality of their data simply to avoid public embarrassment. We can hope and expect that they will do some data cleanup themselves, demand better data from the businesses they regulate, or use creative solutions like turning to crowdsourcing for help, as USAID did to improve geospatial data on its grantees.
 
 

2. Keep improving open data resources
The government has steadily made Data.gov, the central repository of federal open data, more accessible and useful, including a significant relaunch last week. To the agency’s credit, the GSA, which administers Data.gov, plans to keep working to make this key website still better. As part of implementing the Open Data Policy, the administration has also set up Project Open Data on GitHub, the world’s largest community for open-source software. These resources will be helpful for anyone working with open data either inside or outside of government. They need to be maintained and continually improved.
3. Pass DATA
The Digital Accountability and Transparency Act would bring transparency to federal government spending at an unprecedented level of detail. The Act has strong bipartisan support. It passed the House with only one dissenting vote and was unanimously approved by a Senate committee, but still needs full Senate approval and the President’s signature to become law. DATA is also supported by technology companies who see it as a source of new open data they can use in their businesses. Congress should move forward and pass DATA as the logical next step in the work that the Obama administration’s Open Data Policy has begun.
4. Reform the Freedom of Information Act
Since it was passed in 1966, the federal Freedom of Information Act has gone through two major revisions, both of which strengthened citizens’ ability to access many kinds of government data. It’s time for another step forward. Current legislative proposals would establish a centralized web portal for all federal FOIA requests, strengthen the FOIA ombudsman’s office, and require agencies to post more high-interest information online before they receive formal requests for it. These changes could make more information from FOIA requests available as open data.
5. Engage stakeholders in a genuine way
Up to now, the government’s release of open data has largely been a one-way affair: Agencies publish datasets that they hope will be useful without consulting the organizations and companies that want to use it. Other countries, including the UK, France, and Mexico, are building in feedback loops from data users to government data providers, and the US should, too. The Open Data Policy calls for agencies to establish points of contact for public feedback. At the GovLab, we hope that the Open Data 500 will help move that process forward. Our research will provide a basis for new, productive dialogue between government agencies and the businesses that rely on them.
6. Keep using federal challenges to encourage innovation
The federal Challenge.gov website applies the best principles of crowdsourcing and collective intelligence. Agencies should use this approach extensively, and should pose challenges using the government’s open data resources to solve business, social, or scientific problems. Other approaches to citizen engagement, including federally sponsored hackathons and the White House Champions of Change program, can play a similar role.
Through the Open Data Policy and other initiatives, the Obama administration has set the right goals. Now it’s time to implement and move toward what US CTO Todd Park calls “data liberation.” Thousands of companies, organizations, and individuals will benefit.”

New Open Data Tool Helps Countries Compare Progress on Education


World Bank Group: “The World Bank Group today launched a new open data tool that provides in-depth, comparative, and easily accessible data on education policies around the world. The Systems Approach for Better Education Results (SABER) web tool helps countries collect and analyze information on their education policies, benchmark themselves against other countries, and prioritize areas for reform, with the goal of ensuring that all children and youth go to school and learn….
To date, the Bank Group, through SABER, has analyzed more than 100 countries to guide more effective reforms and investments in education at all levels, from pre-primary to tertiary education and workforce development.
Through SABER, the Bank Group aims to improve education quality by supplying policymakers, civil society, school administrators, teachers, parents, and students with more, and more meaningful, data about key education policy areas, including early childhood development, student assessment, teachers, school autonomy and accountability, and workforce development, among others.
SABER helps countries improve their education systems in three ways:

  1. Providing new data on policies and institutions. SABER collects comparable country data on education policies and institutions that are publicly available at: http://worldbank.org/education/saber, allowing governments, researchers, and other stakeholders to measure and monitor progress.
  2. Benchmarking education policies and institutions. Each policy area is rated on a four-point scale, from “Latent” to “Emerging” to “Established” and “Advanced.” These ratings highlight a country’s areas of strength and weakness while promoting cross-country learning.
  3. Highlighting key policy choices. SABER data collection and analysis produce an objective snapshot of how well a country’s education system is performing in relation to global good practice. This helps highlight the most important policy choices to spur learning.”

Opening up open data: An interview with Tim O’Reilly


McKinsey: “The tech entrepreneur, author, and investor looks at how open data is becoming a critical tool for business and government, as well as what needs to be done for it to be more effective.

We’re increasingly living in a world of black boxes. We don’t understand the way things work. And open-source software, open data are critical tools. We see this in the field of computer security. People say, “Well, we have to keep this secret.” Well, it turns out that the strongest security protocols are those that are secure even when people know how they work.

It seems to me that almost every great advance is a platform advance. When we have common standards, so much more happens.
And you think about the standardization of railroad gauges, the standardization of communications, protocols. Think about the standardization of roads, how fundamental those are to our society. And that’s actually kind of a bridge for my work on open government, because I’ve been thinking a lot about the notion of government as a platform.

We should define a little bit what we mean by “open,” because there’s open as in it’s open source. Anybody can take it and reuse it in whatever way they want. And I’m not sure that’s always necessary. There’s a pragmatic open and there’s an ideological open. And the pragmatic open is that it’s available. It’s available in a timely way, in a nonpreferential way, so that some people don’t get better access than others.
And if you look at so many of our apps now on the web, because they are ad-supported and free, we get a lot of the benefits of open. When the cost is low enough, it does in fact create many of the same conditions as a commons. That being said, that requires great restraint, as I said earlier, on the part of companies, because it becomes easy for them to say, “Well, actually we just need to take a little bit more of the value for ourselves. And oh, we just need a bit more of that.” And before long, it really isn’t open at all.

Eric Ries, of Lean Startupfame, talks about a start-up as a machine for learning under conditions of extreme uncertainty.
He said it doesn’t have to do with being a small company, being anything new. He says it’s just whenever you’re trying to do something new, where you don’t know the answers, you have to experiment. You have to have a mechanism for measuring. You have to have mechanisms for changing what you do based on the response to that measurement…
That’s one of the biggest problems, I think, in our government today, that we put out programs. Somebody has a theory about what’s going to work and what the benefit will be. We don’t measure it. We don’t actually see if it did what we thought it was going to do. And we keep doing it. And then it doesn’t work, so we do something else. And then we layer on program after program that doesn’t actually meet its objectives. And if we actually brought in the mind-set that said, “No, actually we’re going to figure out if we actually accomplish what we set out to accomplish; and if we don’t, we’re going to change it,” that would be huge.”

Needed: A New Generation of Game Changers to Solve Public Problems


Beth Noveck: “In order to change the way we govern, it is important to train and nurture a new generation of problem solvers who possess the multidisciplinary skills to become effective agents of change. That’s why we at the GovLab have launched The GovLab Academy with the support of the Knight Foundation.
In an effort to help people in their own communities become more effective at developing and implementing creative solutions to compelling challenges, The Gov Lab Academy is offering two new training programs:
1) An online platform with an unbundled and evolving set of topics, modules and instructors on innovations in governance, including themes such as big and open data and crowdsourcing and forthcoming topics on behavioral economics, prizes and challenges, open contracting and performance management for governance;
2) Gov 3.0: A curated and sequenced, 14-week mentoring and training program.
While the online-platform is always freely available, Gov 3.0 begins on January 29, 2014 and we invite you to to participate. Please forward this email to your networks and help us spread the word about the opportunity to participate.
Please consider applying (individuals or teams may apply), if you are:

  • an expert in communications, public policy, law, computer science, engineering, business or design who wants to expand your ability to bring about social change;

  • a public servant who wants to bring innovation to your job;

  • someone with an important idea for positive change but who lacks key skills or resources to realize the vision;

  • interested in joining a network of like-minded, purpose-driven individuals across the country; or

  • someone who is passionate about using technology to solve public problems.

The program includes live instruction and conversation every Wednesday from 5:00– 6:30 PM EST for 14 weeks starting Jan 29, 2014. You will be able to participate remotely via Google Hangout.

Gov 3.0 will allow you to apply evolving technology to the design and implementation of effective solutions to public interest challenges. It will give you an overview of the most current approaches to smarter governance and help you improve your skills in collaboration, communication, and developing and presenting innovative ideas.

Over 14 weeks, you will develop a project and a plan for its implementation, including a long and short description, a presentation deck, a persuasive video and a project blog. Last term’s projects covered such diverse issues as post-Fukushima food safety, science literacy for high schoolers and prison reform for the elderly. In every case, the goal was to identify realistic strategies for making a difference quickly.  You can read the entire Gov 3.0 syllabus here.

The program will include national experts and instructors in technology and governance both as guests and as mentors to help you design your project. Last term’s mentors included current and former officials from the White House and various state, local and international governments, academics from a variety of fields, and prominent philanthropists.

People who complete the program will have the opportunity to apply for a special fellowship to pursue their projects further.

Previously taught only on campus, we are offering Gov 3.0 in beta as an online program. This is not a MOOC. It is a mentoring-intensive coaching experience. To maximize the quality of the experience, enrollment is limited.

Please submit your application by January 22, 2014. Accepted applicants (individuals and teams) will be notified on January 24, 2014. We hope to expand the program in the future so please use the same form to let us know if you would like to be kept informed about future opportunities.”

Safety Datapalooza Shows Power of Data.gov Communities


Lisa Nelson at DigitalGov: “The White House Office of Public Engagement held the first Safety Datapalooza illustrating the power of Data.gov communities. Federal Chief Technology Officer Todd Park and Deputy Secretary of Transportation John Porcari hosted the event, which touted the data available on Safety.Data.gov and the community of innovators using it to make effective tools for consumers.
The event showcased many of the  tools that have been produced as a result of  opening this safety data including:

  • PulsePoint, from the San Ramon Fire Protection District, a lifesaving mobile app that allows CPR-trained volunteers to be notified if someone nearby is in need of emergency assistance;
  • Commute and crime maps, from Trulia, allow home buyers to choose their new residence based on two important everyday factors; and
  • Hurricane App, from the American Red Cross, to monitor storm conditions, prepare your family and home, find help, and let others know you’re safe even if the power is out;

Safety data is far from alone in generating innovative ideas and gathering a community of developers and entrepreneurs, Data.gov currently has 16 different topically diverse communities on land and sea — the Cities and Oceans communities being two such examples. Data.gov’s communities are a virtual meeting spot for interested parties across government, academia and industry to come together and put the data to use. Data.gov enables a whole set of tools to make these communities come to life: apps, blogs, challenges, forums, ranking, rating and wikis.
For a summary of the Safety Datapalooza visit Transportation’s “Fast Lane” blog.”

Open data movement faces fresh hurdles


SciDevNet: “The open-data community made great strides in 2013 towards increasing the reliability of and access to information, but more efforts are needed to increase its usability on the ground and the general capacity of those using it, experts say.
An international network of innovation hubs, the first extensive open data certification system and a data for development partnership are three initiatives launched last year by the fledgling Open Data Institute (ODI), a UK-based not-for-profit firm that champions the use of open data to aid social, economic and environmental development.
Before open data can be used effectively the biggest hurdles to be cleared are agreeing common formats for data sets and improving their trustworthiness and searchability, says the ODI’s chief statistician, Ulrich Atz.
“As it is so new, open data is often inconsistent in its format, making it difficult to reuse. We see a great need for standards and tools,” he tells SciDev.Net. Data that is standardised is of “incredible value” he says, because this makes it easier and faster to use and gives it a longer useable lifetime.
The ODI — which celebrated its first anniversary last month — is attempting to achieve this with a first-of-its-kind certification system that gives publishers and users important details about online data sets, including publishers’ names and contact information, the type of sharing licence, the quality of information and how long it will be available.
Certificates encourage businesses and governments to make use of open data by guaranteeing their quality and usability, and making them easier to find online, says Atz.
Finding more and better ways to apply open data will also be supported by a growing network of ODI ‘nodes’: centres that bring together companies, universities and NGOs to support open-data projects and communities….
Because lower-income countries often lack well-established data collection systems, they have greater freedom to rethink how data are collected and how they flow between governments and civil society, he says.
But there is still a long way to go. Open-data projects currently rely on governments and other providers sharing their data on online platforms, whereas in a truly effective system, information would be published in an open format from the start, says Davies.
Furthermore, even where advances are being made at a strategic level, open-data initiatives are still having only a modest impact in the real world, he says.
“Transferring [progress at a policy level] into availability of data on the ground and the capacity to use it is a lot tougher and slower,” Davies says.”

New Book: Open Data Now


New book by Joel Gurin (The GovLab): “Open Data is the world’s greatest free resource–unprecedented access to thousands of databases–and it is one of the most revolutionary developments since the Information Age began. Combining two major trends–the exponential growth of digital data and the emerging culture of disclosure and transparency–Open Data gives you and your business full access to information that has never been available to the average person until now. Unlike most Big Data, Open Data is transparent, accessible, and reusable in ways that give it the power to transform business, government, and society.
Open Data Now is an essential guide to understanding all kinds of open databases–business, government, science, technology, retail, social media, and more–and using those resources to your best advantage. You’ll learn how to tap crowds for fast innovation, conduct research through open collaboration, and manage and market your business in a transparent marketplace.
Open Data is open for business–and the opportunities are as big and boundless as the Internet itself. This powerful, practical book shows you how to harness the power of Open Data in a variety of applications:

  • HOT STARTUPS: turn government data into profitable ventures
  • SAVVY MARKETING: understand how reputational data drives your brand
  • DATA-DRIVEN INVESTING: apply new tools for business analysis
  • CONSUMER IN FORMATION: connect with your customers using smart disclosure
  • GREEN BUSINESS: use data to bet on sustainable companies
  • FAST R&D: turn the online world into your research lab
  • NEW OPPORTUNITIES: explore open fields for new businesses

Whether you’re a marketing professional who wants to stay on top of what’s trending, a budding entrepreneur with a billion-dollar idea and limited resources, or a struggling business owner trying to stay competitive in a changing global market–or if you just want to understand the cutting edge of information technology–Open Data Now offers a wealth of big ideas, strategies, and techniques that wouldn’t have been possible before Open Data leveled the playing field.
The revolution is here and it’s now. It’s Open Data Now.”

Supporting open government in New Europe


Google Europe Blog: “The “New Europe” countries that joined the European Union over the past decade are moving ahead fast to use the Internet to improve transparency and open government. We recently partnered with Techsoup Global to support online projects driving forward good governance in Romania, the Czech Republic, and most recently, in Slovakia.
Techsoup Global, in partnership with the Slovak Center for Philanthropy, recently held an exciting social-startups awards ceremony Restart Slovakia 2013 in Bratislava. Slovakia’s Deputy Minister of Finance and Digital Champion Peter Pellegrini delivered keynote promoting Internet and Open Data and announced the winners of this year contest. Ambassadors from U.S., Israel and Romania and several distinguished Slovak NGOs also attended the ceremony.
Winning projects included:

  • Vzdy a vsade – Always and Everywhere – a volunteer portal offering online and anonymous psychological advice to internet users via chat.
  • Nemlcme.sk – a portal providing counsel for victims of sexual assaults.
  • Co robim – an educational online library of job careers advising young people how to choose their career paths and dream jobs.
  • Mapa zlocinu – an online map displaying various rates of criminality in different neighbourhoods.
  • Demagog.sk – a platform focused on analyzing public statements of politicians and releasing information about politicians and truthfulness of their speeches in a user-friendly format.”

From Faith-Based to Evidence-Based: The Open Data 500 and Understanding How Open Data Helps the American Economy


Beth Noveck in Forbes: “Public funds have, after all, paid for their collection, and the law says that federal government data are not protected by copyright. By the end of 2009, the US and the UK had the only two open data one-stop websites where agencies could post and citizens could find open data. Now there are over 300 such portals for government data around the world with over 1 million available datasets. This kind of Open Data — including weather, safety and public health information as well as information about government spending — can serve the country by increasing government efficiency, shedding light on regulated industries, and driving innovation and job creation.

It’s becoming clear that open data has the potential to improve people’s lives. With huge advances in data science, we can take this data and turn it into tools that help people choose a safer hospital, pick a better place to live, improve the performance of their farm or business by having better climate models, and know more about the companies with whom they are doing business. Done right, people can even contribute data back, giving everyone a better understanding, for example of nuclear contamination in post-Fukushima Japan or incidences of price gouging in America’s inner cities.

The promise of open data is limitless. (see the GovLab index for stats on open data) But it’s important to back up our faith with real evidence of what works. Last September the GovLab began the Open Data 500 project, funded by the John S. and James L. Knight Foundation, to study the economic value of government Open Data extensively and rigorously.  A recent McKinsey study pegged the annual global value of Open Data (including free data from sources other than government), at $3 trillion a year or more. We’re digging in and talking to those companies that use Open Data as a key part of their business model. We want to understand whether and how open data is contributing to the creation of new jobs, the development of scientific and other innovations, and adding to the economy. We also want to know what government can do better to help industries that want high quality, reliable, up-to-date information that government can supply. Of those 1 million datasets, for example, 96% are not updated on a regular basis.

The GovLab just published an initial working list of 500 American companies that we believe to be using open government data extensively.  We’ve also posted in-depth profiles of 50 of them — a sample of the kind of information that will be available when the first annual Open Data 500 study is published in early 2014. We are also starting a similar study for the UK and Europe.

Even at this early stage, we are learning that Open Data is a valuable resource. As my colleague Joel Gurin, author of Open Data Now: the Secret to Hot Start-Ups, Smart Investing, Savvy Marketing and Fast Innovation, who directs the project, put it, “Open Data is a versatile and powerful economic driver in the U.S. for new and existing businesses around the country, in a variety of ways, and across many sectors. The diversity of these companies in the kinds of data they use, the way they use it, their locations, and their business models is one of the most striking things about our findings so far.” Companies are paradoxically building value-added businesses on top of public data that anyone can access for free….”

FULL article can be found here.