Improving patient care by bridging the divide between doctors and data scientists

Curated on Posted on by Stefaan Verhulst

 at the Conversation: “While wonderful new medical discoveries and innovations are in the news every day, doctors struggle daily with using information and techniques available right now while carefully adopting new concepts and treatments. As a practicing doctor, I deal with uncertainties and unanswered clinical questions all the time….At the moment, a report from the National Academy of Medicine tells us, most doctors base most of their everyday decisions on guidelines from (sometimes biased) expert opinions or small clinical trials. It would be better if they were from multicenter, large, randomized controlled studies, with tightly controlled conditions ensuring the results are as reliable as possible. However, those are expensive and difficult to perform, and even then often exclude a number of important patient groups on the basis of age, disease and sociological factors.

Part of the problem is that health records are traditionally kept on paper, making them hard to analyze en masse. As a result, most of what medical professionals might have learned from experiences was lost – or at least was inaccessible to another doctor meeting with a similar patient.

A digital system would collect and store as much clinical data as possible from as many patients as possible. It could then use information from the past – such as blood pressure, blood sugar levels, heart rate and other measurements of patients’ body functions – to guide future doctors to the best diagnosis and treatment of similar patients.

Industrial giants such as Google, IBM, SAP and Hewlett-Packard have also recognized the potential for this kind of approach, and are now working on how to leverage population data for the precise medical care of individuals.

Collaborating on data and medicine

At the Laboratory of Computational Physiology at the Massachusetts Institute of Technology, we have begun to collect large amounts of detailed patient data in the Medical Information Mart in Intensive Care (MIMIC). It is a database containing information from 60,000 patient admissions to the intensive care units of the Beth Israel Deaconess Medical Center, a Boston teaching hospital affiliated with Harvard Medical School. The data in MIMIC has been meticulously scoured so individual patients cannot be recognized, and is freely shared online with the research community.

But the database itself is not enough. We bring together front-line clinicians (such as nurses, pharmacists and doctors) to identify questions they want to investigate, and data scientists to conduct the appropriate analyses of the MIMIC records. This gives caregivers and patients the best individualized treatment options in the absence of a randomized controlled trial.

Bringing data analysis to the world

At the same time we are working to bring these data-enabled systems to assist with medical decisions to countries with limited health care resources, where research is considered an expensive luxury. Often these countries have few or no medical records – even on paper – to analyze. We can help them collect health data digitally, creating the potential to significantly improve medical care for their populations.

This task is the focus of Sana, a collection of technical, medical and community experts from across the globe that is also based in our group at MIT. Sana has designed a digital health information system specifically for use by health providers and patients in rural and underserved areas.

At its core is an open-source system that uses cellphones – common even in poor and rural nations – to collect, transmit and store all sorts of medical data. It can handle not only basic patient data such as height and weight, but also photos and X-rays, ultrasound videos, and electrical signals from a patient’s brain (EEG) and heart (ECG).

Partnering with universities and health organizations, Sana organizes training sessions (which we call “bootcamps”) and collaborative workshops (called “hackathons”) to connect nurses, doctors and community health workers at the front lines of care with technology experts in or near their communities. In 2015, we held bootcamps and hackathons in Colombia, Uganda, Greece and Mexico. The bootcamps teach students in technical fields like computer science and engineering how to design and develop health apps that can run on cellphones. Immediately following the bootcamp, the medical providers join the group and the hackathon begins…At the end of the day, though, the purpose is not the apps….(More)

An App to Save Syria’s Lost Generation? What Technology Can and Can’t Do

Curated on Posted on by Stefaan Verhulst

Mark Latonero in Foreign Affairs: ” In January this year, when the refugee and migrant crisis in Europe had hit its peak—more than a million had crossed into Europe over the course of 2015—the U.S. State Department and Google hosted a forum of over 100 technology experts. The goal was to “bridge the education gap for Syrian refugee children.” Speaking to the group assembled at Stanford University, Deputy Secretary of State Antony Blinken announced a $1.7 million prize “to develop a smartphone app that can help Syrian children learn how to read and improve their wellbeing.” The competition, known as EduApp4Syria, is being run by the Norwegian Agency for Development Cooperation (Norad) and is supported by the Australian government and the French mobile company Orange.

Less than a month later, a group called Techfugees brought together over 100 technologists for a daylong brainstorm in New York City focused exclusively on education solutions. “We are facing the largest refugee crisis since World War II,” said U.S. Ambassador to the United Nations Samantha Power to open the conference. “It is a twenty-first-century crisis and we need a twenty-first-century solution.” Among the more promising, according to Power, were apps that enable “refugees to access critical services,” new “web platforms connecting refugees with one another,” and “education programs that teach refugees how to code.”

For example, the nonprofit PeaceGeeks created the Services Advisor app for the UN Refugee Agency, which maps the location of shelters, food distribution centers, and financial services in Jordan….(More)”

Building Data Responsibility into Humanitarian Action

Curated on Posted on by Stefaan Verhulst

Stefaan Verhulst at The GovLab: “Next Monday, May 23rd, governments, non-profit organizations and citizen groups will gather in Istanbul at the first World Humanitarian Summit. A range of important issues will be on the agenda, not least of which the refugee crisis confronting the Middle East and Europe. Also on the agenda will be an issue of growing importance and relevance, even if it does not generate front-page headlines: the increasing potential (and use) of data in the humanitarian context.

To explore this topic, a new paper, “Building Data Responsibility into Humanitarian Action,” is being released today, and will be presented tomorrow at the Understanding Risk Forum. This paper is the result of a collaboration between the United Nations Office for the Coordination of Humanitarian Affairs (OCHA), The GovLab (NYU Tandon School of Engineering), the Harvard Humanitarian Initiative, and Leiden UniversityCentre for Innovation. It seeks to identify the potential benefits and risks of using data in the humanitarian context, and begins to outline an initial framework for the responsible use of data in humanitarian settings.

Both anecdotal and more rigorously researched evidence points to the growing use of data to address a variety of humanitarian crises. The paper discusses a number of data risk case studies, including the use of call data to fight Malaria in Africa; satellite imagery to identify security threats on the border between Sudan and South Sudan; and transaction data to increase the efficiency of food delivery in Lebanon. These early examples (along with a few others discussed in the paper) have begun to show the opportunities offered by data and information. More importantly, they also help us better understand the risks, including and especially those posed to privacy and security.

One of the broader goals of the paper is to integrate the specific and the theoretical, in the process building a bridge between the deep, contextual knowledge offered by initiatives like those discussed above and the broader needs of the humanitarian community. To that end, the paper builds on its discussion of case studies to begin establishing a framework for the responsible use of data in humanitarian contexts. It identifies four “Minimum Humanitarian standards for the Responsible use of Data” and four “Characteristics of Humanitarian Organizations that use Data Responsibly.” Together, these eight attributes can serve as a roadmap or blueprint for humanitarian groups seeking to use data. In addition, the paper also provides a four-step practical guide for a data responsibility framework (see also earlier blog)….(More)” Full Paper: Building Data Responsibility into Humanitarian Action

Society’s biggest problems need more than a nudge

Curated on Posted on by Stefaan Verhulst

 at the Conversation: “So-called “nudge units” are popping up in governments all around the world.

The best-known examples include the U.K.’s Behavioural Insights Team, created in 2010, and the White House-based Social and Behavioral Sciences Team, introduced by the Obama administration in 2014. Their mission is to leverage findings from behavioral science so that people’s decisions can be nudged in the direction of their best intentions without curtailing their ability to make choices that don’t align with their priorities.

Overall, these – and other – governments have made important strides when it comes to using behavioral science to nudge their constituents into better choices.

Yet, the same governments have done little to improve their own decision-making processes. Consider big missteps like the Flint water crisis. How could officials in Michigan decide to place an essential service – safe water – and almost 100,000 people at risk in order to save US$100 per day for three months? No defensible decision-making process should have allowed this call to be made.

When it comes to many of the big decisions faced by governments – and the private sector – behavioral science has more to offer than simple nudges.

Behavioral scientists who study decision-making processes could also help policy-makers understand why things went wrong in Flint, and how to get their arms around a wide array of society’s biggest problems – from energy transitions to how to best approach the refugee crisis in Syria.

When nudges are enough

The idea of nudging people in the direction of decisions that are in their own best interest has been around for a while. But it was popularized in 2008 with the publication of the bestseller “Nudge“ by Richard Thaler of the University of Chicago and Cass Sunstein of Harvard.

A common nudge goes something like this: if we want to eat better but are having a hard time doing it, choice architects can reengineer the environment in which we make our food choices so that healthier options are intuitively easier to select, without making it unrealistically difficult to eat junk food if that’s what we’d rather do. So, for example, we can shelve healthy foods at eye level in supermarkets, with less-healthy options relegated to the shelves nearer to the floor….

Sometimes a nudge isn’t enough

Nudges work for a wide array of choices, from ones we face every day to those that we face infrequently. Likewise, nudges are particularly well-suited to decisions that are complex with lots of different alternatives to choose from. And, they are advocated in situations where the outcomes of our decisions are delayed far enough into the future that they feel uncertain or abstract. This describes many of the big decisions policy-makers face, so it makes sense to think the solution must be more nudge units.

But herein lies the rub. For every context where a nudge seems like a realistic option, there’s at least another context where the application of passive decision support would be either be impossible – or, worse, a mistake.

Take, for example, the question of energy transitions. These transitions are often characterized by the move from infrastructure based on fossil fuels to renewables to address all manner of risks, including those from climate change. These are decisions that society makes infrequently. They are complex. And, the outcomes – which are based on our ability to meet conflicting economic, social and environmental objectives – will be delayed.

But, absent regulation that would place severe restrictions on the kinds of options we could choose from – and which, incidentally, would violate the freedom-of-choice tenet of choice architecture – there’s no way to put renewable infrastructure options at proverbial eye level for state or federal decision-makers, or their stakeholders.

Simply put, a nudge for a decision like this would be impossible. In these cases, decisions have to be made the old-fashioned way: with a heavy lift instead of a nudge.

Complex policy decisions like this require what we call active decision support….(More)”

Crowdsourcing Human Rights

Curated on Posted on by Stefaan Verhulst

Faisal Al Mutar at The World Post: “The Internet has also allowed activists to access information as never before. I recently joined the Movements.org team, a part of the New York-based organization, Advancing Human Rights. This new platform allows activists from closed societies to connect directly with people around the world with skills to help them. In the first month of its launch, thousands of activists from 92 countries have come to Movements.org to defend human rights.

Movements.org is a promising example of how technology can be utilized by activists to change the world. Dissidents from some of the most repressive dictatorships — Russia, Iran, Syria and China — are connecting with individuals from around the globe who have unique skills to aid them.

Here are just a few of the recent success stories:

  • A leading Saudi expert on combatting state-sponsored incitement in textbooks posted a request to speak with members of the German government due to their strict anti-hate-speech laws. A former foundation executive connected him with senior German officials.
  • A secular Syrian group posted a request for PR aid to explain to Americans that the opposition is not comprised solely of radical elements. The founder of a strategic communication firm based in Los Angeles responded and offered help.
  • A Yemeni dissident asked for help creating a radio station focused on youth empowerment. He was contacted by a Syrian dissident who set up Syrian radio programs to offer advice.
  • Journalists from leading newspapers offered to tell human rights stories and connected with activists from dictatorships.
  • A request was created for a song to commemorate the life of Sergei Magnitsky, a Russia tax lawyer who died in prisoner. A NYC-based song-writer created a beautiful song and activists from Russia (including a member of Pussy Riot) filmed a music video of it.
  • North Korean defectors posted requests to get information in and out of their country and technologists posted offers to help with radio and satellite communication systems.
  • A former Iranian political prisoner posted a request to help sustain his radio station which broadcasts into Iran and helps keep information flowing to Iranians.

There are more and more cases everyday….(More)”

How to Crowdsource the Syrian Cease-Fire

Curated on Posted on by Stefaan Verhulst

Colum Lynch at Foreign Policy: “Can the wizards of Silicon Valley develop a set of killer apps to monitor the fragile Syria cease-fire without putting foreign boots on the ground in one of the world’s most dangerous countries?

They’re certainly going to try. The “cessation of hostilities” in Syria brokered by the United States and Russia last month has sharply reduced the levels of violence in the war-torn country and sparked a rare burst of optimism that it could lead to a broader cease-fire. But if the two sides lay down their weapons, the international community will face the challenge of monitoring the battlefield to ensure compliance without deploying peacekeepers or foreign troops. The emerging solution: using crowdsourcing, drones, satellite imaging, and other high-tech tools.

The high-level interest in finding a technological solution to the monitoring challenge was on full display last month at a closed-door meeting convened by the White House that brought together U.N. officials, diplomats, digital cartographers, and representatives of Google, DigitalGlobe, and other technology companies. Their assignment was to brainstorm ways of using high-tech tools to keep track of any future cease-fires from Syria to Libya and Yemen.

The off-the-record event came as the United States, the U.N., and other key powers struggle to find ways of enforcing cease-fires from Syria at a time when there is little political will to run the risk of sending foreign forces or monitors to such dangerous places. The United States has turned to high-tech weapons like armed drones as weapons of war; it now wants to use similar systems to help enforce peace.

Take the Syria Conflict Mapping Project, a geomapping program developed by the Atlanta-based Carter Center, a nonprofit founded by former U.S. President Jimmy Carter and his wife, Rosalynn, to resolve conflict and promote human rights. The project has developed an interactive digital map that tracks military formations by government forces, Islamist extremists, and more moderate armed rebels in virtually every disputed Syrian town. It is now updating its technology to monitor cease-fires.

The project began in January 2012 because of a single 25-year-old intern, Christopher McNaboe. McNaboe realized it was possible to track the state of the conflict by compiling disparate strands of publicly available information — including the shelling and aerial bombardment of towns and rebel positions — from YouTube, Twitter, and other social media sites. It has since developed a mapping program using software provided by Palantir Technologies, a Palo Alto-based big data company that does contract work for U.S. intelligence and defense agencies, from the CIA to the FBI….

Walter Dorn, an expert on technology in U.N. peace operations who attended the White House event, said he had promoted what he calls a “coalition of the connected.”

The U.N. or other outside powers could start by tracking social media sites, including Twitter and YouTube, for reports of possible cease-fire violations. That information could then be verified by “seeded crowdsourcing” — that is, reaching out to networks of known advocates on the ground — and technological monitoring through satellite imagery or drones.

Matthew McNabb, the founder of First Mile Geo, a start-up which develops geolocation technology that can be used to gather data in conflict zones, has another idea. McNabb, who also attended the White House event, believes “on-demand” technologies like SurveyMonkey, which provides users a form to create their own surveys, can be applied in conflict zones to collect data on cease-fire violations….(More)

Nudging voters

Curated on Posted on by Stefaan Verhulst

John Hasnas and Annette Hasnas at the Hill: “A perennial complaint about our democracy is that too large a portion of the electorate is poorly informed about important political issues. This is the problem of the ignorant voter. Especially this year, with its multiplicity of candidates, keeping track of the candidates’ various, and often shifting, policy positions can be extraordinarily difficult. As a result, many of those voting in the presidential primaries will cast their ballots with little idea of where the candidates stand on several important issues.

Isn’t there some way to nudge the voters into making more informed choices? Well, actually, yes, there is. But in making this claim, we use the word nudge advisedly.

Among contemporary policy analysts, “nudge” is a term of art. It refers to creating a context within which people make choices–a “choice architecture”–that makes it more likely that people will select one option rather than another. The typical example of a nudge is a school cafeteria in which fruits and vegetables are placed in front in easy to reach locations and less healthy fare is placed in less visible and harder to reach locations. No one is forced to select the fruit or vegetables, but the choice architecture makes it more likely that people will.
The key feature of a nudge is that it is not coercive. It is an effort to influence choice, not to impose it. People are always able to “opt out” of the nudge. Thus, to nudge is to design the context in which individuals make decisions so as to influence their choice without eliminating any options.

We think that nudging can be employed to help voters make more informed decisions in the voting booth.

Imagine the following scenario. A bipartisan good government group creates a list of the most significant contemporary policy issues. It then invites all candidates to state their positions on the issues. In the current campaign, candidates could be invited to state where they stand on gay marriage, immigration, intervention in Syria, climate change, tax reform, the minimum wage, gun control, income inequality, etc. This information would be collected and fed into the relevant election commission computer. When voters enter the voting booth, they would have the option of electronically recording their policy preferences on the same form that the candidates completed. The computer would display a ranking of the candidates on the basis of how closely their positions aligned with the voter’s. After receiving this information, voters would cast their ballots.

Our proposal is a nudge. It is completely non-coercive. No candidate would be required to complete the list of his or her policy positions, although refusing to do so might be viewed negatively by voters. No voter would be required to utilize the option. All would remain free to simply walk into the booth and cast their vote. Even those who utilize the option remain free to disregard its results and vote for whomever they please. The proposal simply alters the choice architecture of voting to build in access to a source of information about the candidates. Yet, it makes it more likely that citizens will cast more informed votes than they do at present….(More)”

Startup Helps Cities Launch Crowdfunding Campaigns

Curated on Posted on by Stefaan Verhulst

 in Government Technology: “Popular crowdfunding platforms like Kickstarter and Indiegogo have been a hotbed for the aspiring to fund product prototypes, publish artistic works and create everything from films to trendy foods. Now governments are stepping into the mix to harness the low-risk funding method for community parks, gardens, sidewalks and more. And as public-sector interest in crowdfunding has grown, so too has interest from startup companies.

One of those, Citizinvestor, offers a crowdfunding platform tailored for government. Co-founders Tony DeSisto, Jordan Raynor, and Erik Rapprich launched the Tampa, Fla.-based civic tech company in 2012 to help localities raise thousands of dollars for numerous projects across the nation. Public officials simply add photos and a description of projects and the Web app pitches them to interested citizens.

While still a young company, Citizinvestor compares well with the more established Kickstarter, notwithtanding Kickstarter’s success — that since launch in 2009, has generated more than $2.2 billion for 100,000-plus projects. Citizinvestor’s own project funding success rate of 60 percent is higher than market leader Kickstarter’s rate of 36 percent. Funded projects have run from an $81,000 dog park to a roughly $1,000 set of bicycle racks….(More)

Big data’s big role in humanitarian aid

Curated on Posted on by Stefaan Verhulst

Mary K. Pratt at Computerworld: “Hundreds of thousands of refugees streamed into Europe in 2015 from Syria and other Middle Eastern countries. Some estimates put the number at nearly a million.

The sheer volume of people overwhelmed European officials, who not only had to handle the volatile politics stemming from the crisis, but also had to find food, shelter and other necessities for the migrants.

Sweden, like many of its European Union counterparts, was taking in refugees. The Swedish Migration Board, which usually sees 2,500 asylum seekers in an average month, was accepting 10,000 per week.

“As you can imagine, with that number, it requires a lot of buses, food, registration capabilities to start processing all the cases and to accommodate all of those people,” says Andres Delgado, head of operational control, coordination and analysis at the Swedish Migration Board.

Despite the dramatic spike in refugees coming into the country, the migration agency managed the intake — hiring extra staff, starting the process of procuring housing early, getting supplies ready. Delgado credits a good part of that success to his agency’s use of big data and analytics that let him predict, with a high degree of accuracy, what was heading his way.

“Without having that capability, or looking at the tool every day, to assess every need, this would have crushed us. We wouldn’t have survived this,” Delgado says. “It would have been chaos, actually — nothing short of that.”

The Swedish Migration Board has been using big data and analytics for several years, as it seeks to gain visibility into immigration trends and what those trends will mean for the country…./…

“Can big data give us peace? I think the short answer is we’re starting to explore that. We’re at the very early stages, where there are shining examples of little things here and there. But we’re on that road,” says Kalev H. Leetaru, creator of the GDELT Project, or the Global Database of Events, Language and Tone, which describes itself as a comprehensive “database of human society.”

The topic is gaining traction. A 2013 report, “New Technology and the Prevention of Violence and Conflict,” from the International Peace Institute, highlights uses of telecommunications technology, including data, in several crisis situations around the world. The report emphasizes the potential these technologies hold in helping to ease tensions and address problems.

The report’s conclusion offers this idea: “Big data can be used to identify patterns and signatures associated with conflict — and those associated with peace — presenting huge opportunities for better-informed efforts to prevent violence and conflict.”

That’s welcome news to Noel Dickover. He’s the director of PeaceTech Data Networks at the PeaceTech Lab, which was created by the U.S. Institute of Peace (USIP) to advance USIP’s work on how technology, media and data help reduce violent conflict around the world.

Such work is still in the nascent stages, Dickover says, but people are excited about its potential. “We have unprecedented amounts of data on human sentiment, and we know there’s value there,” he says. “The question is how to connect it.”

Dickover is working on ways to do just that. One example is the Open Situation Room Exchange (OSRx) project, which aims to “empower greater collective impact in preventing or mitigating serious violent conflicts in particular arenas through collaboration and data-sharing.”…(More)

Five ways tech is crowdsourcing women’s empowerment

Curated on Posted on by Stefaan Verhulst

Zara Rahman in The Guardian: “Around the world, women’s rights advocates are crowdsourcing their own data rather than relying on institutional datasets.

Citizen-generated data is especially important for women’s rights issues. In many countries the lack of women in positions of institutional power, combined with slow, bureaucratic systems and a lack of prioritisation of women’s rights issues means data isn’t gathered on relevant topics, let alone appropriately responded to by the state.

Even when data is gathered by institutions, societal pressures may mean it remains inadequate. In the case of gender-based violence, for instance, women often suffer in silence, worrying nobody will believe them or that they will be blamed. Providing a way for women to contribute data anonymously or, if they so choose, with their own details, can be key to documenting violence and understanding the scale of a problem, and thus deciding upon appropriate responses.

Crowdsourcing data on street harassment in Egypt

Using open source platform Ushahidi, HarassMap provides women with a way to document incidences of street harassment. The project, which began in 2010, is raising awareness of how common street harassment is, giving women’s rights advocates a concrete way to highlight the scale of the problem….

Documenting experiences of reporting sexual harassment and violence to the police in India

Last year, The Ladies Finger, a women’s zine based in India, partnered with Amnesty International to support its Ready to Report campaign, which aimed to make it easier for survivors of sexual violence to file a police complaint. Using social media and through word of mouth, it asked the community if they had experiences to share about reporting sexual assault and harassment to the police. Using these crowdsourced leads, The Ladies Finger’s reporters spoke to people willing to share their experiences and put together a series of detailed contextualised stories. They included a piece that evoked a national outcry and spurred the Uttar Pradesh government to make an arrest for stalking, after six months of inaction….

Reporting sexual violence in Syria

Women Under Siege is a global project by Women’s Media Centre that is investigating how rape and sexual violence is used in conflicts. Its Syria project crowdsources data on sexual violence in the war-torn country. Like HarassMap, it uses the Ushahidi platform to geolocate where acts of sexual violence take place. Where possible, initial reports are contextualised with deeper media reports around the case in question….

Finding respectful gynaecologists in India

After recognising that many women in her personal networks were having bad experiences with gynaecologists in India, Delhi-based Amba Azaad began – with the help of her friends – putting together a list of gynaecologists who had treated patients respectfully called Gynaecologists We Trust. As the site says, “Finding doctors who are on our side is hard enough, and when it comes to something as intimate as our internal plumbing, it’s even more difficult.”…

Ending tech-related violence against women

In 2011, Take Back the Tech, an initiative from the Association for Progressive Communications, started a map gathering incidences of tech-related violence against women. Campaign coordinator Sara Baker says crowdsourcing data on this topic is particularly useful as “victims/survivors are often forced to tell their stories repeatedly in an attempt to access justice with little to no action taken on the part of authorities or intermediaries”. Rather than telling that story multiple times and seeing it go nowhere, their initiative gives people “the opportunity to make their experience visible (even if anonymously) and makes them feel like someone is listening and taking action”….(More)