Stefaan Verhulst
“Open Knowledge today announced plans to develop Open Trials, an open, online database of information about the world’s clinical research trials funded by The Laura and John Arnold Foundation. The project, which is designed to increase transparency and improve access to research, will be directed by Dr. Ben Goldacre, an internationally known leader on clinical transparency.
Open Trials will aggregate information from a wide variety of existing sources in order to provide a comprehensive picture of the data and documents related to all trials of medicines and other treatments around the world. Conducted in partnership with the Center for Open Science and supported by the Center’s Open Science Framework, the project will also track whether essential information about clinical trials is transparent and publicly accessible so as to improve understanding of whether specific treatments are effective and safe.
“There have been numerous positive statements about the need for greater transparency on information about clinical trials, over many years, but it has been almost impossible to track and audit exactly what is missing,” Dr. Goldacre, the project’s Chief Investigator and a Senior Clinical Research Fellow in the Centre for Evidence Based Medicine at the University of Oxford, explained. “This project aims to draw together everything that is known around each clinical trial. The end product will provide valuable information for patients, doctors, researchers, and policymakers—not just on individual trials, but also on how whole sectors, researchers, companies, and funders are performing. It will show who is failing to share information appropriately, who is doing well, and how standards can be improved.”
Patients, doctors, researchers, and policymakers use the evidence from clinical trials to make informed decisions about which treatments are best. But studies show that roughly half of all clinical trial results are not published, with positive results published twice as often as negative results. In addition, much of the important information about the methods and findings of clinical trials is only made available outside the normal indexes of academic journals….
Open Trials will help to automatically identify which trial results have not been disclosed by matching registry data on trials that have been conducted against documents containing trial results. This will facilitate routine public audit of undisclosed results. It will also improve discoverability of other documents around clinical trials, which will be indexed and, in some cases, hosted. Lastly, it will help improve recruitment for clinical trials by making information and commentary on ongoing trials more accessible….(More)”
Mo Ibrahim in the Financial Times: “As finance ministers gather this week in Washington DC they cannot but agree and commit to fighting extreme poverty. All of us must rejoice in the fact that over the past 15 years, the world has reportedly already “halved the number of poor people living on the planet”.
But none of us really knows it for sure. It could be less, it could be more. In fact, for every crucial issue related to human development, whether it is poverty, inequality, employment, environment or urbanization, there is a seminal crisis at the heart of global decision making – the crisis of poor data.
Because the challenges are huge and the resources scarce, on these issues more maybe than anywhere else, we need data, to monitor the results and adapt the strategies whenever needed. Bad data feed bad management, weak accountability, loss of resources and, of course, corruption.
It is rather bewildering that while we live in this technology-driven age, the development communities and many of our African governments are relying too much on guesswork. Our friends in the development sector and our African leaders would not dream of driving their cars or flying without instruments. But somehow they pretend they can manage and develop countries without reliable data.
The development community must admit it has a big problem. The sector is relying on dodgy data sets. Take the data on extreme poverty. The data we have are mainly extrapolations of estimates from years back – even up to a decade or more ago. For 38 out of 54 African countries, data on poverty and inequality are either out-dated or non-existent. How can we measure progress with such a shaky baseline? To make things worse we also don’t know how much countries spend on fighting poverty. Only 3 per cent of African citizens live in countries where governmental budgets and expenditures are made open, according to the Open Budget Index. We will never end extreme poverty if we don’t know who or where the poor are, or how much is being spent to help them.
Our African countries have all fought and won their political independence. They should now consider the battle for economic sovereignty, which begins with the ownership of sound and robust national data: how many citizens, living where, and how, to begin with.
There are three levels of intervention required.
First, a significant increase in resources for credible, independent, national statistical institutions. Establishing a statistical office is less eye-catching than building a hospital or school but data driven policy will ensure that more hospital and schools are delivered more effectively and efficiently. We urgently need these boring statistical offices. In 2013, out of a total aid budget of $134.8bn, a mere $280m went in support of statistics. Governments must also increase the resources they put into data.
Second, innovative means of collecting data. Mobile phones, geocoding, satellites and the civic engagement of young tech-savvy citizens to collect data can all secure rapid improvements in baseline data if harnessed.
Third, everyone must take on this challenge of the global public good dimension of high quality open data. Public registers of the ownership of companies, global standards on publishing payments and contracts in the extractives sector and a global charter for open data standards will help media and citizens to track corruption and expose mismanagement. Proposals for a new world statistics body – “Worldstat” – should be developed and implemented….(More)”
Chapter by Kazjon Grace et al in Design Computing and Cognition ’14: “Crowdsourcing design has been applied in various areas of graphic design, software design, and product design. This paper draws on those experiences and research in diversity, creativity and motivation to present a process model for crowdsourcing experience design. Crowdsourcing experience design for volunteer online communities serves two purposes: to increase the motivation of participants by making them stakeholders in the success of the project, and to increase the creativity of the design by increasing the diversity of expertise beyond experts in experience design. Our process model for crowdsourcing design extends the meta-design architecture, where for online communities is designed to be iteratively re-designed by its users. We describe how our model has been deployed and adapted to a citizen science project where nature preserve visitors can participate in the design of a system called NatureNet. The major contribution of this paper is a model for crowdsourcing experience design and a case study of how we have deployed it for the design and development of NatureNet….(More)”
Russell Brandom in TheVerge: “Early warning on earthquakes can help save lives, but many countries can’t afford them. That’s why scientists are turning to another location sensor already widespread in many countries: the smartphone. A single smartphone makes for a crappy earthquake sensor — but get enough of them reporting, and it won’t matter.
A new study, published today in Science Advances, says that the right network of cell phones might be able to substitute for modern seismograph arrays, providing a crucial early warning in the event of a quake. The study looks at historical earthquake data and modern smartphone hardware (based on the Nexus 5) and comes away with a map of how a smartphone-based earthquake detector might work. As it turns out, a phone’s GPS is more powerful than you might think.
A modern phone has almost everything you could want in an earthquake sensor
Early warning systems are designed to pick up the first tremors of an earthquake, projecting where the incoming quake is centered and how strong it’s likely to be. When they work, the systems are able to give citizens and first responders crucial time to prepare for the quake. There are already seismograph-based systems in place in California, Mexico, and Japan, but poorer countries often don’t have the means to implement and maintain them. This new method wouldn’t be as good as most scientific earthquake sensors, but those can cost tens of thousands of dollars each, making a smartphone-based sensor a lot cheaper. For countries that can’t afford a seismograph-based system (which includes much of the Southern Hemisphere), it could make a crucial difference in catching quakes early.
A modern phone has almost everything you could want in an earthquake sensor: specifically, a GPS-powered location sensor, an accelerometer, and multiple data connections. There are also a lot of them, even in poor countries, so a distributed system could count on getting data points from multiple angles….(More)”
DataShift: “Following a study to better understand the number, type and scale of citizen-generated data initiatives across the world, the DataShift has visualised the resulting data to create an interactive online platform. Users are presented with a definition of a citizen-generated data initiative before being invited to browse the multiple initiatives according to the various themes that they address….(More)”
Springwise: “There has been a lot of talk about the outdated nature of voting infrastructures. Citizens can now shop, bank and date online, but are still required to visit a polling station in person to participate in democratic votes. Harvard start-up Voatz hopes to change that with their secure, global mobile voting and campaigning platform.
Voatz could enable members of the public to cast their vote, participate in opinion polls and make campaign donations from their smartphone during elections in the not too distant future. Voters would be required to undergo comprehensive identity verification and use a biometric-enabled smartphone in order to participate in the remote, electronic voting. Voatz hope the technology can help to make voting more simple and accessible using familiar technology…(More)”
Eric J. Topol in Nature: ” I call for an international open medical resource to provide a database for every individual’s genomic, metabolomic, microbiomic, epigenomic and clinical information. This resource is needed in order to facilitate genetic diagnoses and transform medical care.
“We are each, in effect, one-person clinical trials”
Laurie Becklund was a noted journalist who died in February 2015 at age 66 from breast cancer. Soon thereafter, the Los Angeles Times published her op-ed entitled “As I lay dying” (Ref. 1). She lamented, “We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them”. She went on to assert that, in the era of big data, the lack of such a resource is “criminal”, and she is absolutely right….
Around the same time of this important op-ed, the MIT Technology Review published their issue entitled “10 Breakthrough Technologies 2015” and on the list was the “Internet of DNA” (Ref. 2). While we are often reminded that the world we live in is becoming the “Internet of Things”, I have not seen this terminology applied to DNA before. The article on the “Internet of DNA” decried, “the unfolding calamity in genomics is that a great deal of life-saving information, though already collected, is inaccessible”. It called for a global network of millions of genomes and cited theMatchmaker Exchange as a frontrunner. For this international initiative, a growing number of research and clinical teams have come together to pool and exchange phenotypic and genotypic data for individual patients with rare disorders, in order to share this information and assist in the molecular diagnosis of individuals with rare diseases….
an Internet of DNA — or what I have referred to as a massive, open, online medicine resource (MOOM) — would help to quickly identify the genetic cause of the disorder4 and, in the process of doing so, precious guidance for prevention, if necessary, would become available for such families who are currently left in the lurch as to their risk of suddenly dying.
So why aren’t such MOOMs being assembled? ….
There has also been much discussion related to privacy concerns that patients might be unwilling to participate in a massive medical information resource. However, multiple global consumer surveys have shown that more than 80% of individuals are ready to share their medical data provided that they are anonymized and their privacy maximally assured4. Indeed, just 24 hours into Apple’s ResearchKit initiative, a smartphone-based medical research programme, there were tens of thousand of patients with Parkinson disease, asthma or heart disease who had signed on. Some individuals are even willing to be “open source” — that is, to make their genetic and clinical data fully available with free access online, without any assurance of privacy. This willingness is seen by the participants in the recently launched Open Humans initiative. Along with the Personal Genome Project, Go Viral and American Gut have joined in this initiative. Still, studies suggest that most individuals would only agree to be medical research participants if their identities would not be attainable. Unfortunately, to date, little has been done to protect individual medical privacy, for which there are both promising new data protection technological approaches4 and the need for additional governmental legislation.
This leaves us with perhaps the major obstacle that is holding back the development of MOOMs — researchers. Even with big, team science research projects culling together hundreds of investigators and institutions throughout the world, such as the Global Alliance for Genomics and Health (GA4GH), the data obtained clinically are just as Laurie Becklund asserted in her op-ed — “one-person clinical trials” (Ref. 1). While undertaking the construction of a MOOM is a huge endeavour, there is little motivation for researchers to take on this task, as this currently offers no academic credit and has no funding source. But the transformative potential of MOOMs to improve medical care is extraordinary. Rather than having the knowledge die with each of us, the time has come to take down the walls of academic medical centres and health-care systems around the world, and create a global knowledge medical resource that leverages each individual’s information to help one another…(More)”
Press Release: “Today, Bloomberg Philanthropies announced the launch of the What Works Cities initiative, a $42 million program to help 100 mid-sized cities better use data and evidence. What Works Cities is the latest initiative from Bloomberg Philanthropies’ Government Innovation portfolio which promotes public sector innovation and spreads effective ideas amongst cities.
Through partners, Bloomberg Philanthropies will help mayors and local leaders use data and evidence to engage the public, make government more effective and improve people’s lives. U.S. cities with populations between 100,000 and 1 million people are invited to apply.
“While cities are working to meet new challenges with limited resources, they have access to more data than ever – and they are increasingly using it to improve people’s lives,” said Michael R. Bloomberg. “We’ll help them build on their progress, and help even more cities take steps to put data to work. What works? That’s a question that every city leader should ask – and we want to help them find answers.”
The $42 million dollar effort is the nation’s most comprehensive philanthropic initiative to help accelerate the ability of local leaders to use data and evidence to improve the lives of their residents. What Works Cities will provide mayors with robust technical assistance, expertise, and peer-to-peer learning opportunities that will help them enhance their use of data and evidence to improve services to solve problems for communities. The program will help cities:
1. Create sustainable open data programs and policies that promote transparency and robust citizen engagement;
2. Better incorporate data into budget, operational, and policy decision making;
3. Conduct low-cost, rapid evaluations that allow cities to continually improve programs; and
4. Focus funding on approaches that deliver results for citizens.
Across the initiative, Bloomberg Philanthropies will document how cities currently use data and evidence in decision making, and how this unique program of support helps them advance. Over time, the initiative will also launch a benchmark system which will collect standardized, comparable data so that cities can understand their performance relative to peers.
In cities across the country, mayors are increasingly relying on data and evidence to deliver better results for city residents. For example, New Orleans’ City Hall used data to reduce blighted residences by 10,000 and increased the number of homes brought into compliance by 62% in 2 years. The City’s “BlightStat” program has put New Orleans, once behind in efforts to revitalize abandoned and decaying properties, at the forefront of national efforts.
In New York City and other jurisdictions, open data from transit agencies has led to the creation of hundreds of apps that residents now use to get around town, choose where to live based on commuting times, provide key transit information to the visually impaired, and more. And Louisville has asked volunteers to attach GPS trackers to their asthma inhalers to see where they have the hardest time breathing. The city is now using that data to better target the sources of air pollution….
To learn more and apply to be a What Works City, visitwww.WhatWorksCities.org.”
Paper by Steven Gittelman et al in the Journal of Medical Internet Research: “The development of the Internet and the explosion of social media have provided many new opportunities for health surveillance. The use of the Internet for personal health and participatory health research has exploded, largely due to the availability of online resources and health care information technology applications [–]. These online developments, plus a demand for more timely, widely available, and cost-effective data, have led to new ways epidemiological data are collected, such as digital disease surveillance and Internet surveys [–]. Over the past 2 decades, Internet technology has been used to identify disease outbreaks, track the spread of infectious disease, monitor self-care practices among those with chronic conditions, and to assess, respond, and evaluate natural and artificial disasters at a population level [,,,,,,,,–]. Use of these modern communication tools for public health surveillance has proven to be less costly and more timely than traditional population surveillance modes (eg, mail surveys, telephone surveys, and face-to-face household surveys).
The Internet has spawned several sources of big data, such as Facebook [], Twitter [], Instagram [], Tumblr [], Google [], and Amazon []. These online communication channels and market places provide a wealth of passively collected data that may be mined for purposes of public health, such as sociodemographic characteristics, lifestyle behaviors, and social and cultural constructs. Moreover, researchers have demonstrated that these digital data sources can be used to predict otherwise unavailable information, such as sociodemographic characteristics among anonymous Internet users [–]. For example, Goel et al [] found no difference by demographic characteristics in the usage of social media and email. However, the frequency with which individuals accessed the Web for news, health care, and research was a predictor of gender, race/ethnicity, and educational attainment, potentially providing useful targeting information based on ethnicity and income []. Integrating these big data sources into the practice of public health surveillance is vital to move the field of epidemiology into the 21st century as called for in the 2012 US “Big Data Research and Development Initiative” [,].
Understanding how big data can be used to predict lifestyle behavior and health-related data is a step toward the use of these electronic data sources for epidemiologic needs…(More)”
The upshot has been the appearance of a variety of “open data” and “open government” initiatives throughout the United States that try to use data as a lever to improve government performance and encourage warmer citizens’ attitudes toward government.
This report is based on the first national survey that seeks to benchmark public sentiment about the government initiatives that use data to cultivate the public square. The survey, conducted by Pew Research Center in association with the John S. and James L. Knight Foundation, captures public views at the emergent moment when new technology tools and techniques are being used to disseminate and capitalize on government data and specifically looks at:
- People’s level of awareness of government efforts to share data
- Whether these efforts translate into people using data to track government performance
- If people think government data initiatives have made, or have the potential to make, government perform better or improve accountability
- The more routine kinds of government-citizen online interactions, such as renewing licenses or searching for the hours of public facilities.
The results cover all three levels of government in America — federal, state and local — and show that government data initiatives are in their early stages in the minds of most Americans. Generally, people are optimistic that these initiatives can make government more accountable; even though many are less sure open data will improve government performance. And government does touch people online, as evidenced by high levels of use of the internet for routine information applications. But most Americans have yet to delve too deeply into government data and its possibilities to closely monitor government performance.
Among the survey’s main findings:
As open data and open government initiatives get underway, most Americans are still largely engaged in “e-Gov 1.0” online activities, with far fewer attuned to “Data-Gov 2.0” initiatives that involve agencies sharing data online for public use….
Americans are for the most part comfortable with government sharing online data about their communities, although they sound cautionary notes when the data hits close to home…
Smartphone users have embraced information-gathering using mobile apps that rely on government data to function, but not many see a strong link between the underlying government data and economic value…