Susan Young Rojahn in MIT Technology Review: “PatientsLikeMe, the largest online network for patients, has established its first broad partnership with a drug company. Genentech, the South San Francisco biotechnology company bought by Roche in 2009, now has access to PatientsLikeMe’s full database for five years.
PatientsLikeMe is an online network of some 250,000 people with chronic diseases who share information about symptoms, treatments, and coping mechanisms. The largest communities within the network are built around fibromyalgia, multiple sclerosis, and amyotrophic lateral sclerosis (ALS), but as many as 2,000 conditions are represented in the system. The hope is that the information shared by people with chronic disease will help the life sciences industry identify unmet needs in patients and generate medical evidence, says co-founder Ben Heywood.
The agreement with Genentech is not the first collaboration between a life sciences company and PatientsLikeMe, named one of 50 Disruptive Companies in 2012 by MIT Technology Review, but it is the broadest. Previous collaborations were more limited in scope, says Heywood, focusing on a particular research question or a specific disease area. The deal with Genentech is an all-encompassing subscription to information posted by the entire PatientsLikeMe population, without the need for new contracts and new business deals if a research program shifts direction from its original focus. “This allows for a much more rapid real-time use of the data,” says Heywood.
In 2010, PatientsLikeMe demonstrated some of its potential to advance medicine. With data from its community of ALS patients, who suffer from a progressive and fatal neurological disease, the company could see that a drug under study was not effective (see “Patients’ Social Network Predicts Drug Outcomes”). Those findings were corroborated by an academic study published that year. Another area of medicine the network can shed light on is the quality of care patients receive, including whether or not doctors are following guidelines established by medical societies for how patients are treated. “As we try to shift to patient-centered health care, we have to understand what [patients] value,” says Heywood.
In exchange for an undisclosed payment to PatientsLikeMe, Genentech has a five-year subscription to the data in the online network. The data will be de-identified– that is, Genentech will not see patient names or email addresses. Heywood says his company is hoping to establish broad agreements with other life sciences companies soon.”
'Hackathons' Aim to Solve Health Care's Ills
Amy Dockser Marcus in the Wall Street Journal: “Hackathons, the high-octane, all-night problem-solving sessions popularized by the software-coding community, are making their way into the more traditional world of health care. At Massachusetts Institute of Technology, a recent event called Hacking Medicine’s Grand Hackfest attracted more than 450 people to work for one weekend on possible solutions to problems involving diabetes, rare diseases, global health and information technology used at hospitals.
Health institutions such as New York-Presbyterian Hospital and Brigham and Women’s Hospital in Boston have held hackathons. MIT, meantime, has co-sponsored health hackathons in India, Spain and Uganda.
Hackathons of all kinds are increasingly popular. Intel Corp. recently bought a group that organizes them. Companies hoping to spark creative thinking sponsor them. And student-run hackathons have turned into intercollegiate competitions.
But in health care, where change typically comes much more slowly than in Silicon Valley, they represent a cultural shift. To solve a problem, scientists and doctors can spend years painstakingly running experiments, gathering data, applying for grants and publishing results. So the idea of an event where people give two-minute pitches describing a problem, then join a team of strangers to come up with a solution in the course of one weekend is radical.
“We are not trying to replace the medical culture with Facebook culture,” said Elliot Cohen, who wore a hoodie over a button-down dress shirt at the MIT event in March and helped start MIT Hacking Medicine while at business school. “But we want to try to blend them more.”
Mr. Cohen co-founded and is chief technology officer at PillPack, a pharmacy that sends customers personalized packages of their medications, a company that started at a hackathon.
At MIT’s health-hack, physicians, researchers, students and a smattering of people wearing Google Glass sprawled on the floor of MIT’s Media Lab and at tables with a view of the Boston skyline. At one table, a group of college students, laptops plastered with stickers, pulled juice boxes and snacks out of backpacks, trash piling up next to them as they feverishly wrote code.
Nupur Garg, an emergency-room physician and one of the eventual winners, finished her hospital shift at 2 a.m. Saturday in New York, drove to Boston and arrived at MIT in time to pitch the need for a way to capture images of patients’ ears and throats that can be shared with specialists to help make diagnoses. She and her team immediately started working on a prototype for the device, testing early versions on anyone who stopped by their table.
Dr. Garg and teammate Nancy Liang, who runs a company that makes Web apps for 3-D printers, caught a few hours of sleep in a dorm room Saturday night. They came up with the idea for their product’s name—MedSnap—later that night while watching students use cellphone cameras to send SnapChats to one another. “There was no time to conduct surveys on what was the best name,” said Ms. Liang. “Many ideas happen after midnight.”
Winning teams in each category won $1,000, as well as access to the hackathons sponsors for advice and pilot projects.
Yet even supporters say hackathons can’t solve medicine’s challenges overnight. Harlan Krumholz, a professor at Yale School of Medicine who ran a many-months trial that found telemonitoring didn’t reduce hospitalizations or deaths of cardiology patients, said he supports the problem-solving ethos of hackathons. But he added that “improvements require a long-term commitment, not just a weekend.”
Ned McCague, a data scientist at Blue Cross Blue Shield of Massachusetts, served as a mentor at the hackathon. He said he wasn’t representing his employer, but he used his professional experiences to push groups to think about the potential customer. “They have a good idea and are excited about it, but they haven’t thought about who is paying for it,” he said.
Zen Chu, a senior lecturer in health-care innovation and entrepreneur-in-residence at MIT, and one of the founders of Hacking Medicine, said more than a dozen startups conceived since the first hackathon, in 2011, are still in operation. Some received venture-capital funding.
The upsides of hackathons were made clear to Sharon Moalem, a physician who studies rare diseases. He had spent years developing a mobile app that can take pictures of faces to help diagnose rare genetic conditions, but was stumped on how to give the images a standard size scale to make comparisons. At the hackathon, Dr. Moalem said he was approached by an MIT student who suggested sticking a coin on the subjects’ forehead. Since quarters have a standard measurement, it “creates a scale,” said Dr. Moalem.
Dr. Moalem said he had never considered such a simple, elegant solution. The team went on to write code to help standardize facial measurements based on the dimensions of a coin and a credit card.
“Sometimes when you are too close to something, you stop seeing solutions, you only see problems,” Dr. Moalem said. “I needed to step outside my own silo.”
Smart cities are here today — and getting smarter
Computer World: “Smart cities aren’t a science fiction, far-off-in-the-future concept. They’re here today, with municipal governments already using technologies that include wireless networks, big data/analytics, mobile applications, Web portals, social media, sensors/tracking products and other tools.
These smart city efforts have lofty goals: Enhancing the quality of life for citizens, improving government processes and reducing energy consumption, among others. Indeed, cities are already seeing some tangible benefits.
But creating a smart city comes with daunting challenges, including the need to provide effective data security and privacy, and to ensure that myriad departments work in harmony.
The global urban population is expected to grow approximately 1.5% per year between 2025 and 2030, mostly in developing countries, according to the World Health Organization.
What makes a city smart? As with any buzz term, the definition varies. But in general, it refers to using information and communications technologies to deliver sustainable economic development and a higher quality of life, while engaging citizens and effectively managing natural resources.
Making cities smarter will become increasingly important. For the first time ever, the majority of the world’s population resides in a city, and this proportion continues to grow, according to the World Health Organization, the coordinating authority for health within the United Nations.
A hundred years ago, two out of every 10 people lived in an urban area, the organization says. As recently as 1990, less than 40% of the global population lived in a city — but by 2010 more than half of all people lived in an urban area. By 2050, the proportion of city dwellers is expected to rise to 70%.
As many city populations continue to grow, here’s what five U.S. cities are doing to help manage it all:
Scottsdale, Ariz.
The city of Scottsdale, Ariz., has several initiatives underway.
One is MyScottsdale, a mobile application the city deployed in the summer of 2013 that allows citizens to report cracked sidewalks, broken street lights and traffic lights, road and sewer issues, graffiti and other problems in the community….”
Ten Innovations to Compete for Global Innovation Award
Making All Voices Count: “The Global Innovation Competition was launched at the Open Government Partnership Summit in November, 2013 and set out to scout the globe for fresh ideas to enhance government accountability and boost citizen engagement. The call was worldwide and in response, nearly 200 innovative ideas were submitted. After a process of public voting and peer review, these have been reduced to ten.
Below, we highlight the innovations that will now compete for a prize of £65,000 plus six months mentorship at the Global Innovation Week March 31 – April 4, 2014 in Kenya.
The first seven emerged from a process of peer review and the following three were selected by the Global Innovation Jury.
An SMS gateway, connected to local hospitals and the web, to channel citizens’ requests for pregnancy services. At risk women, in need of information such as hospital locations and general advice, will receive relevant and targeted updates utilising both an SMS and a GIS-based system. The aim is to reduce maternal mortality by targeting at risk women in poorer communities in Indonesia.
“One of the causes of high maternal mortality rate in Indonesia is late response in childbirth treatment and lack of pregnancy care information.”
This project, led by a civil servant, aims to engage citizens in Pakistan in service delivery governance. The project aims to enable and motivate citizens to collect, analyze and disseminate service delivery performance data in order to drive performance and help effective decision making.
“BSDU will serve as a model of better management aided by the citizens, for the citizens.”
A Geographic Information System that gives Indonesian citizens access to information regarding government funded projects. The idea is to enable and motivate citizens to compare a project’s information with its real-world implementation and to provide feedback on this. The ultimate aim is to fight corruption in the public sector by making it easier for citizens to monitor, and provide feedback on, government-funded projects.
“On-the-map information about government-funded projects, where citizens are able to submit their opinions, should became a global standard in budget transparency!”
A digital payment system in South Africa that rewards citizens who participate in activities such as waste separation and community gardening. Citizens are able to ‘spend’ rewards on airtime, pre-paid electricity and groceries. By rewarding social volunteers this project aims to boost citizen engagement, build trust and establish the link between government and citizen actors.
“GEM offers a direct channel for communication and rewards between governments and citizens.”
An app created by a team of software developers to provide Ghanaian citizens with information about the oil and gas industry, with the aim of raising awareness of the revenue generated and to spark debate about how this could be used to improve national development.
“The idea is to bring citizens, the oil and gas companies and the government all onto one platform.”
Ghana Petrol Watch seeks to deliver basic facts and figures associated with oil and gas exploration to the average Ghanaian. The solution employs mobile technology to deliver this information. The audience can voice their concerns as comments on the issue via replies to the SMS. These would then be published on the web portal for further exposure and publicity.
“The information on the petroleum industry is publicly available, but not readily accessible and often does not reach the grassroots community in an easily comprehensible manner.”
A common platform to be implemented in Khulna City, Bangladesh, where citizens and elected officials will interact on budget, expenditure and information.
“The concept of citizen engagement for the fulfillment of pre-election commitment is an innovation in establishing governance.”
The aim of this project is an increase in child engagement in governmental budgeting and policy formulation in Mwanza City, Tanzania. This project was selected as a wildcard by the Global Innovation Jury.
“In many projects I have seen, children are always the perceived beneficiaries, rarely do you see innovations where children are active participants in achieving a goal in their society. It was great to see children as active contributors to their own discourse.” – Jury Member, Shikoh Gitau.
A ‘watchdog’ newsletter in Kenya focusing on monitoring the actions of officials with the aim of educating, empowering and motivating citizens to hold their leaders to account. This project was selected as a wildcard by the Global Innovation Jury.
“We endeavor to bridge the information gap in northern Kenya by giving voice to the voiceless and also highlighting their challenges. The aim is an increase in the educational level of the people through information.”
Citizen Desk is an open-source tool that combines the ability of citizens to share eyewitness reports with the public need for verified information in real time. Citizen Desk lets citizen journalists file reports via SMS or social media, with no need for technical training. This project was selected as a wildcard by the Global Innovation Jury.
“It has become evident for some time now that good technical innovation must rest on a strong bedrock of social and political activity, on the ground, deeply in touch with local conditions, and sometimes in the face of power and privilege.” – Jury Member Bright Simons.”
Democracy in Retreat
Book by Joshua Kurlantzick (Council on Foreign Relations) on “The Revolt of the Middle Class and the Worldwide Decline of Representative Government”: “Since the end of the Cold War, most political theorists have assumed that as countries develop economically, they will also become more democratic—especially if a vibrant middle class takes root. The triumph of democracy, once limited to a tiny number of states and now spread across the globe, has been considered largely inevitable.
In Democracy in Retreat: The Revolt of the Middle Class and the Worldwide Decline of Representative Government, CFR Fellow for Southeast Asia Joshua Kurlantzick identifies forces that threaten democracy and shows that conventional wisdom has blinded world leaders to a real crisis. “Today a constellation of factors, from the rise of China to the lack of economic growth in new democracies to the West’s financial crisis, has come together to hinder democracy throughout the developing world,” he writes. “Absent radical and unlikely changes in the international system, that combination of antidemocratic factors will have serious staying power.”
Kurlantzick pays particular attention to the revolt of middle class citizens, traditionally proponents of reform, who have turned against democracy in countries such as Venezuela, Pakistan, and Taiwan. He observes that countries once held up as model new democracies, such as Hungary and the Czech Republic, have since curtailed social, economic, and political freedoms. Military coups have grabbed power from Honduras to Thailand to Fiji. The number of representative governments has fallen, and the quality of democracy has deteriorated in many states where it had been making progress, including Russia, Kenya, Argentina, and Nigeria.
The renewed strength of authoritarian rule, warns Kurlantzick, means that billions of people around the world continue to live under repressive regimes.”
New Field Guide Explores Open Data Innovations in Disaster Risk and Resilience
Worldbank: “From Indonesia to Bangladesh to Nepal, community members armed with smartphones and GPS systems are contributing to some of the most extensive and versatile maps ever created, helping inform policy and better prepare their communities for disaster risk.
In Jakarta, more than 500 community members have been trained to collect data on thousands of hospitals, schools, private buildings, and critical infrastructure. In Sri Lanka, government and academic volunteers mapped over 30,000 buildings and 450 km of roadways using a collaborative online resource called OpenStreetMaps.
These are just a few of the projects that have been catalyzed by the Open Data for Resilience Initiative (OpenDRI), developed by the World Bank’s Global Facility for Disaster Reduction and Recovery (GFDRR). Launched in 2011, OpenDRI is active in more than 20 countries today, mapping tens of thousands of buildings and urban infrastructure, providing more than 1,000 geospatial datasets to the public, and developing innovative application tools.
To expand this work, the World Bank Group has launched the OpenDRI Field Guide as a showcase of successful projects and a practical guide for governments and other organizations to shape their own open data programs….
The field guide walks readers through the steps to build open data programs based on the OpenDRI methodology. One of the first steps is data collation. Relevant datasets are often locked because of proprietary arrangements or fragmented in government bureaucracies. The field guide explores tools and methods to enable the participatory mapping projects that can fill in gaps and keep existing data relevant as cities rapidly expand.
In Jakarta, more than 500 community members have been trained to collect data on thousands of hospitals, schools, private buildings, and critical infrastructure. In Sri Lanka, government and academic volunteers mapped over 30,000 buildings and 450 km of roadways using a collaborative online resource called OpenStreetMaps.
These are just a few of the projects that have been catalyzed by the Open Data for Resilience Initiative (OpenDRI), developed by the World Bank’s Global Facility for Disaster Reduction and Recovery (GFDRR). Launched in 2011, OpenDRI is active in more than 20 countries today, mapping tens of thousands of buildings and urban infrastructure, providing more than 1,000 geospatial datasets to the public, and developing innovative application tools.
To expand this work, the World Bank Group has launched the OpenDRI Field Guide as a showcase of successful projects and a practical guide for governments and other organizations to shape their own open data programs….
The field guide walks readers through the steps to build open data programs based on the OpenDRI methodology. One of the first steps is data collation. Relevant datasets are often locked because of proprietary arrangements or fragmented in government bureaucracies. The field guide explores tools and methods to enable the participatory mapping projects that can fill in gaps and keep existing data relevant as cities rapidly expand.
GeoNode: Mapping Disaster Damage for Faster Recovery
One example is GeoNode, a locally controlled and open source cataloguing tool that helps manage and visualize geospatial data. The tool, already in use in two dozen countries, can be modified and easily be integrated into existing platforms, giving communities greater control over mapping information.
GeoNode was used extensively after Typhoon Yolanda (Haiyan) swept the Philippines with 300 km/hour winds and a storm surge of over six meters last fall. The storm displaced nearly 11 million people and killed more than 6,000.
An event-specific GeoNode project was created immediately and ultimately collected more than 72 layers of geospatial data, from damage assessments to situation reports. The data and quick analysis capability contributed to recovery efforts and is still operating in response mode at Yolandadata.org.
InaSAFE: Targeting Risk Reduction
A sister project, InaSAFE, is an open, easy-to-use tool for creating impact assessments for targeted risk reduction. The assessments are based on how an impact layer – such as a tsunami, flood, or earthquake – affects exposure data, such as population or buildings.
With InaSAFE, users can generate maps and statistical information that can be easily disseminated and even fed back into projects like GeoNode for simple, open source sharing.
The initiative, developed in collaboration with AusAID and the Government of Indonesia, was put to the test in the 2012 flood season in Jakarta, and its successes provoked a rapid national rollout and widespread interest from the international community.
Open Cities: Improving Urban Planning & Resilience
The Open Cities project, another program operating under the OpenDRI platform, aims to catalyze the creation, management and use of open data to produce innovative solutions for urban planning and resilience challenges across South Asia.
In 2013, Kathmandu was chosen as a pilot city, in part because the population faces the highest mortality threat from earthquakes in the world. Under the project, teams from the World Bank assembled partners and community mobilizers to help execute the largest regional community mapping project to date. The project surveyed more than 2,200 schools and 350 health facilities, along with road networks, points of interest, and digitized building footprints – representing nearly 340,000 individual data nodes.”
Why the wealthiest countries are also the most open with their data
Emily Badger in the Washington Post: “The Oxford Internet Institute this week posted a nice visualization of the state of open data in 70 countries around the world, reflecting the willingness of national governments to release everything from transportation timetables to election results to machine-readable national maps. The tool is based on the Open Knowledge Foundation’s Open Data Index, an admittedly incomplete but telling assessment of who willingly publishes updated, accurate national information on, say, pollutants (Sweden) and who does not (ahem, South Africa).
Tally up the open data scores for these 70 countries, and the picture looks like this, per the Oxford Internet Institute (click on the picture to link through to the larger interactive version):
…With apologies for the tiny, tiny type (and the fact that many countries aren’t listed here at all), a couple of broad trends are apparent. For one, there’s a prominent global “openness divide,” in the words of the Oxford Internet Institute. The high scores mostly come from Europe and North America, the low scores from Asia, Africa and Latin America. Wealth is strongly correlated with “openness” by this measure, whether we look at World Bank income groups or Gross National Income per capita. By the OII’s calculation, wealth accounts for about a third of the variation in these Open Data Index scores.
Perhaps this is an obvious correlation, but the reasons why open data looks like the luxury of rich economies are many, and they point to the reality that poor countries face a lot more obstacles to openness than do places like the United States. For one thing, openness is also closely correlated with Internet penetration. Why open your census results if people don’t have ways to access it (or means to demand it)? It’s no easy task to do this, either.”
Are Cities Losing Control Over 'Smart' Initiatives?
Opinion by Alex Marshall in GovTech: “From the thermostats on our walls to the sensors under the asphalt of our streets, digital technology – the so-called Internet of things – is pervading and infecting every aspect of our lives.
As this technology comes to cities, whether lazy suburban ones or frenetic urban centers, it is increasingly wearing the banner of “Smart Cities.” Like those other S-words and phrases, such as smart growth and sustainability, a smart city can be just about anything to anybody, and therein lies both its utility and danger. I use the term to mean the marrying of our places with the telecommunications revolution that has took hold over the last half century, including the silicon chip, the Internet, the fiber optic line and broadband networks.
Because this transformation is so broad and deep, it’s impossible to list or even dream of all the different ways we will reshape our communities, any more than we could 100 years ago name all the ways the then-new technologies of electricity or phone service would be employed. But we can list some of the ways digital technologies are being used right now. It’s sensors in sewers, face-recognizing cameras in plazas, and individual streetlights being controlled through a dial in an office at City Hall. It’s entire new cities arising out of the ground, like Songdo in South Korea or others in the Middle East….
But as wondrous as these new technologies are, we should remember an old truth: Whether it’s the silicon chip or the entire Internet, they are just tools that deliver power and possibilities to whoever wields them. So, it’s important to know and to think about who will and should control these tools. A policeman can use street cameras with facial recognition software to look for a thief, or a dictator can use them to hunt for dissidents. So far, different cities even within the same country are answering that question differently.”
Open Government -Opportunities and Challenges for Public Governance
New volume of Public Administration and Information Technology series: “Given this global context, and taking into account both the need of academicians and practitioners, it is the intention of this book to shed light on the open government concept and, in particular:
• To provide comprehensive knowledge of recent major developments of open government around the world.
• To analyze the importance of open government efforts for public governance.
• To provide insightful analysis about those factors that are critical when designing, implementing and evaluating open government initiatives.
• To discuss how contextual factors affect open government initiatives’success or failure.
• To explore the existence of theoretical models of open government.
• To propose strategies to move forward and to address future challenges in an international context.”
This algorithm can predict a revolution
Russell Brandom at the Verge: “For students of international conflict, 2013 provided plenty to examine. There was civil war in Syria, ethnic violence in China, and riots to the point of revolution in Ukraine. For those working at Duke University’s Ward Lab, all specialists in predicting conflict, the year looks like a betting sheet, full of predictions that worked and others that didn’t pan out.
Guerrilla campaigns intensified, proving out the prediction
When the lab put out their semiannual predictions in July, they gave Paraguay a 97 percent chance of insurgency, largely based on reports of Marxist rebels. The next month, guerrilla campaigns intensified, proving out the prediction. In the case of China’s armed clashes between Uighurs and Hans, the models showed a 33 percent chance of violence, even as the cause of each individual flare-up was concealed by the country’s state-run media. On the other hand, the unrest in Ukraine didn’t start raising alarms until the action had already started, so the country was left off the report entirely.
According to Ward Lab’s staff, the purpose of the project isn’t to make predictions but to test theories. If a certain theory of geopolitics can predict an uprising in Ukraine, then maybe that theory is onto something. And even if these specialists could predict every conflict, it would only be half the battle. “It’s a success only if it doesn’t come at the cost of predicting a lot of incidents that don’t occur,” says Michael D. Ward, the lab’s founder and chief investigator, who also runs the blog Predictive Heuristics. “But it suggests that we might be on the right track.”
If a certain theory of geopolitics can predict an uprising in Ukraine, maybe that theory is onto something
Forecasting the future of a country wasn’t always done this way. Traditionally, predicting revolution or war has been a secretive project, for the simple reason that any reliable prediction would be too valuable to share. But as predictions lean more on data, they’ve actually become harder to keep secret, ushering in a new generation of open-source prediction models that butt against the siloed status quo.
Will this country’s government face an acute existential threat in the next six months?
The story of automated conflict prediction starts at the Defense Advance Research Projects Agency, known as the Pentagon’s R&D wing. In the 1990s, DARPA wanted to try out software-based approaches to anticipating which governments might collapse in the near future. The CIA was already on the case, with section chiefs from every region filing regular forecasts, but DARPA wanted to see if a computerized approach could do better. They looked at a simple question: will this country’s government face an acute existential threat in the next six months? When CIA analysts were put to the test, they averaged roughly 60 percent accuracy, so DARPA’s new system set the bar at 80 percent, looking at 29 different countries in Asia with populations over half a million. It was dubbed ICEWS, the Integrated Conflict Early Warning System, and it succeeded almost immediately, clearing 80 percent with algorithms built on simple regression analysis….
On the data side, researchers at Georgetown University are cataloging every significant political event of the past century into a single database called GDELT, and leaving the whole thing open for public research. Already, projects have used it to map the Syrian civil war and diplomatic gestures between Japan and South Korea, looking at dynamics that had never been mapped before. And then, of course, there’s Ward Lab, releasing a new sheet of predictions every six months and tweaking its algorithms with every development. It’s a mirror of the same open-vs.-closed debate in software — only now, instead of fighting over source code and security audits, it’s a fight over who can see the future the best.”