Using Crowdsourcing to Track the Next Viral Disease Outbreak


The TakeAway: “Last year’s Ebola outbreak in West Africa killed more than 11,000 people. The pandemic may be diminished, but public health officials think that another major outbreak of infectious disease is fast-approaching, and they’re busy preparing for it.

Boston public radio station WGBH recently partnered with The GroundTruth Project and NOVA Next on a series called “Next Outbreak.” As part of the series, they reported on an innovative global online monitoring system called HealthMap, which uses the power of the internet and crowdsourcing to detect and track emerging infectious diseases, and also more common ailments like the flu.

Researchers at Boston Children’s Hospital are the ones behind HealthMap (see below), and they use it to tap into tens of thousands of sources of online data, including social media, news reports, and blogs to curate information about outbreaks. Dr. John Brownstein, chief innovation officer at Boston Children’s Hospital and co-founder of HealthMap, says that smarter data collection can help to quickly detect and track emerging infectious diseases, fatal or not.

“Traditional public health is really slowed down by the communication process: People get sick, they’re seen by healthcare providers, they get laboratory confirmed, information flows up the channels to state and local health [agencies], national governments, and then to places like the WHO,” says Dr. Brownstein. “Each one of those stages can take days, weeks, or even months, and that’s the problem if you’re thinking about a virus that can spread around the world in a matter of days.”

The HealthMap team looks at a variety of communication channels to undo the existing hierarchy of health information.

“We make everyone a stakeholder when it comes to data about outbreaks, including consumers,” says Dr. Brownstein. “There are a suite of different tools that public health officials have at their disposal. What we’re trying to do is think about how to communicate and empower individuals to really understand what the risks are, what the true information is about a disease event, and what they can do to protect themselves and their families. It’s all about trying to demystify outbreaks.”

In addition to the map itself, the HealthMap team has a number of interactive tools that individuals can both use and contribute to. Dr. Brownstein hopes these resources will enable the public to care more about disease outbreaks that may be happening around them—it’s a way to put the “public” back in “public health,” he says.

“We have a app called Outbreaks Near Me that allows people to know about what disease outbreaks are happening in their neighborhood,” Dr. Brownstein says. “Flu Near You is a an app that people use to self report on symptoms; Vaccine Finder is a tool that allows people to know what vaccines are available to them and their community.”

In addition to developing their own app, the HealthMap has partnered with existing tech firms like Uber to spread the word about public health.

“We worked closely with Uber last year and actually put nurses in Uber cars and delivered vaccines to people,” Dr. Brownstein says. “The closest vaccine location might still be only a block away for people, but people are still hesitant to get it done.”…(More)”

Statistical objectivity is a cloak spun from political yarn


Angus Deaton at the Financial Times: “The word data means things that are “given”: baseline truths, not things that are manufactured, invented, tailored or spun. Especially not by politics or politicians. Yet this absolutist view can be a poor guide to using the numbers well. Statistics are far from politics-free; indeed, politics is encoded in their genes. This is ultimately a good thing.

We like to deal with facts, not factoids. We are scandalised when politicians try to censor numbers or twist them, and most statistical offices have protocols designed to prevent such abuse. Headline statistics often seem simple but typically have many moving parts. A clock has two hands and 12 numerals yet underneath there may be thousands of springs, cogs and wheels. Politics is not only about telling the time, or whether the clock is slow or fast, but also about how to design the cogs and wheels. Down in the works, even where the decisions are delegated to bureaucrats and statisticians, there is room for politics to masquerade as science. A veneer of apolitical objectivity can be an effective disguise for a political programme.

Just occasionally, however, the mask drops and the design of the cogs and wheels moves into the glare of frontline politics. Consumer price indexes are leading examples of this. Britain’s first consumer price index was based on spending patterns from 1904. Long before the second world war, these weights were grotesquely outdated. During the war, the cabinet was worried about a wage-price spiral and the Treasury committed to hold the now-irrelevant index below the astonishingly precise value of 201.5 (1914=100) through a policy of food subsidies. It would, for example, respond to an increase in the price of eggs by lowering the price of sugar. Reform of the index would have jeopardised the government’s ability to control it and was too politically risky. The index was not updated until 1947….

These examples show the role of politics needs to be understood, and built in to any careful interpretation of the data. We must always work from multiple sources, and look deep into the cogs and wheels. James Scott, the political scientist, noted that statistics are how the state sees. The state decides what it needs to see and how to see it. That politics infuses every part of this is a testament to the importance of the numbers; lives depend on what they show.

For global poverty or hunger statistics, there is no state and no one’s material wellbeing depends on them. Politicians are less likely to interfere with such data, but this also removes a vital source of monitoring and accountability. Politics is a danger to good data; but without politics data are unlikely to be good, or at least not for long….(More)”

 

Cleaning Up Lead Poisoning One Tweet at a Time


WorldPolicy Blog: “At first, no one knew why the children of Bagega in Zamfara state were dying. In the spring of 2010, hundreds of kids in and around the northern Nigerian village were falling ill, having seizures and going blind, many of them never to recover. A Médecins Sans Frontières‎ team soon discovered the causes: gold and lead.

With the global recession causing the price of precious metals to soar, impoverished villagers had turned to mining the area’s gold deposits. But the gold veins were mingled with lead, and as a result the villagers’ low-tech mining methods were sending clouds of lead-laced dust into the air. The miners, unknowingly carrying the powerful toxin on their clothes and skin, brought it into their homes where their children breathed it in.

The result was perhaps the worst outbreak of lead poisoning in history, killing over 400 children in Bagega and neighboring villages. In response, the Nigerian government pledged to cleanup the lead-contaminated topsoil and provide medical care to the stricken children. But by mid-2012, there was no sign of the promised funds. Digitally savvy activists with the organization Connected Development (CODE) stepped in to make sure that the money was disbursed.

A group of young Nigerians founded CODE in 2010 in the capital Abuja, with the mission of empowering local communities to hold the government to account by improving their access to information and helping their voices to be heard. “In 2010, we were working to connect communities with data for advocacy programs,” says CODE co-founder Oludotun Babayemi, a former country director of a World Wildlife Fund project in Nigeria. “When we heard about Bagega, we thought this was an opportunity for us.”

In 2012, CODE launched a campaign dubbed ‘Follow the Money Nigeria’ aimed at applying pressure on the government to release the promised funds. “Eighty percent of the less developed parts of Nigeria have zero access to Twitter, let alone Facebook, so it’s difficult for them to convey their stories,” says Babayemi. “We collect all the videos and testimonies and take it global.”

CODE members travelled to the lead-afflicted area to gather information. They then posted their findings online, and publicized them with a #SaveBagegahashtag, which they tweeted to members of the government, local and international organizations and the general public. CODE hosted a 48-hour ‘tweet-a-thon’, joined by a senator, to support the campaign….

By July 2014, CODE reported that the clean-up was complete and that over 1,000 children had been screened and enrolled in lead treatment programs. Bagega’s health center has also been refurbished and the village’s roads improved. “There are thousands of communities like Bagega,” says Babayemi. “They just need someone to amplify their voice.”….

Key lessons

  • Revealing information is not enough; change requires a real-world campaign driven by that information and civil society champions who can leverage their status and networks to draw international attention to the issues and maintain pressure.
  • Building relationships with sympathetic members of government is key.
  • Targeted online campaigns can help amplify the message of marginalized communities offline to achieve impact (More)”

Advancing Open and Citizen-Centered Government


The White House: “Today, the United States released our third Open Government National Action Plan, announcing more than 40 new or expanded initiatives to advance the President’s commitment to an open and citizen-centered government….In the third Open Government National Action Plan, the Administration both broadens and deepens efforts to help government become more open and more citizen-centered. The plan includes new and impactful steps the Administration is taking to openly and collaboratively deliver government services and to support open government efforts across the country. These efforts prioritize a citizen-centric approach to government, including improved access to publicly available data to provide everyday Americans with the knowledge and tools necessary to make informed decisions.

One example is the College Scorecard, which shares data through application programming interfaces (APIs) to help students and families make informed choices about education. Open APIs help create an ecosystem around government data in which civil society can provide useful visual tools, making this data more accessible and commercial developers can enable even more value to be extracted to further empower students and their families. In addition to these newer approaches, the plan also highlights significant longstanding open government priorities such as access to information, fiscal transparency, and records management, and continues to push for greater progress in that work.

The plan also focuses on supporting implementation of the landmark 2030 Agenda for Sustainable Development, which sets out a vision and priorities for global development over the next 15 years and was adopted last month by 193 world leaders including President Obama. The plan includes commitments to harness open government and progress toward the Sustainable Development Goals (SDGs) both in the United States and globally, including in the areas of education, health, food security, climate resilience, science and innovation, justice and law enforcement. It also includes a commitment to take stock of existing U.S. government data that relates to the 17 SDGs, and to creating and using data to support progress toward the SDGs.

Some examples of open government efforts newly included in the plan:

  • Promoting employment by unlocking workforce data, including training, skill, job, and wage listings.
  • Enhancing transparency and participation by expanding available Federal services to theOpen311 platform currently available to cities, giving the public a seamless way to report problems and request assistance.
  • Releasing public information from the electronically filed tax forms of nonprofit and charitable organizations (990 forms) as open, machine-readable data.
  • Expanding access to justice through the White House Legal Aid Interagency Roundtable.
  • Promoting open and accountable implementation of the Sustainable Development Goals….(More)”

How open company data was used to uncover the powerful elite benefiting from Myanmar’s multi-billion dollar jade industry


OpenCorporates: “Today, we’re pleased to release a white paper on how OpenCorporates data was used to uncover the powerful elite benefiting from Myanmar’s multi-billion dollar jade industry, in a ground-breaking report from Global Witness. This investigation is an important case study on how open company data and identifiers are critical tool to uncover corruption and the links between companies and the real people benefitting from it.

This white paper shows how not only was it critical that OpenCorporates had this information (much of the information was removed from the official register during the investigation), but that the fact that it was machine-readable data, available via an API (data service), and programmatically combinable with other data was essential to discover the hidden connections between the key actors and the jade industry. Global Witness was able to analyse this data with the help of Open Knowledge.

In this white paper, we make recommendations about the collection and publishing of statutory company information as open data to facilitate the creation of a hostile environment for corruption by providing a rigorous framework for public scrutiny and due diligence.

You can find the white paper here or read it on Medium.”

Can Mobile Phone Surveys Identify People’s Development Priorities?


Ben Leo and Robert Morello at the Center for Global Development: “Mobile phone surveys are fast, flexible, and cheap. But, can they be used to engage citizens on how billions of dollars in donor and government resources are spent? Over the last decade, donor governments and multilateral organizations have repeatedly committed to support local priorities and programs. Yet, how are they supposed to identify these priorities on a timely, regular basis? Consistent discussions with the local government are clearly essential, but so are feeding ordinary people’s views into those discussions. However, traditional tools, such as household surveys or consultative roundtables, present a range of challenges for high-frequency citizen engagement. That’s where mobile phone surveys could come in, enabled by the exponential rise in mobile coverage throughout the developing world.

Despite this potential, there have been only a handful of studies into whether mobile surveys are a reliable and representative tool across a broad range of developing-country contexts. Moreover, there have been almost none that specifically look at collecting information about people’s development priorities. Along with Tiago Peixoto,Steve Davenport, and Jonathan Mellon, who focus on promoting citizen engagement and open government practices at the World Bank, we sought to address this policy research gap. Through a study focused on four low-income countries (Afghanistan, Ethiopia, Mozambique, and Zimbabwe), we rigorously tested the feasibility of interactive voice recognition (IVR) surveys for gauging citizens’ development priorities.

Specifically, we wanted to know whether respondents’ answers are sensitive to a range of different factors, such as (i) the specified executing actor (national government or external partners); (ii) time horizons; or (iii) question formats. In other words, can we be sufficiently confident that surveys about people’s priorities can be applied more generally to a range of development actors and across a range of country contexts?

Several of these potential sensitivity concerns were raised in response to an earlier CGD working paper, which found that US foreign aid is only modestly aligned with Africans’ and Latin Americans’ most pressing concerns. This analysis relied upon Afrobarometer and Latinobarometro survey data (see explanatory note below). For instance, some argued that people’s priorities for their own government might be far less relevant for donor organizations. Put differently, the World Bank or USAID shouldn’t prioritize job creation in Nigeria simply because ordinary Nigerians cite it as a pressing government priority. Our hypothesis was that development priorities would likely transcend all development actors, and possibly different timeframes and question formats as well. But, we first needed to test these assumptions.

So, what did we find? We’ve included some of the key highlights below. For a more detailed description of the study and the underlying analysis, please see our new working paper. Along with our World Bank colleagues, we also published an accompanying paper that considers a range of survey method issues, including survey representativeness….(More)”

Can Human-Centered Design “Fix” Humanitarian Aid?


Carnegie Council: “Design thinking has emerged as a new tool in humanitarianism. Proponents of the trend believe it can solve the problem long plaguing the aid community: that great ideas fail to be adopted in poor communities because they don’t always take context into account. But are design’s more inclusive methods still a kind of neo-imperialism? Is there a different way?

In this episode of Carnegie Council’s podcast Impact: Where Business and Ethics Meet, host Julia Taylor-Kennedy interviews Debbie Aung Din Taylor,Bruce Nussbaum, Susan Eve Oguya, and Jocelyn Wyatt….

With the rise of social enterprise and corporate social responsibility in the business world, and more efficiency and impact measurements in the non-profit world, one of the trends we’re tracking on the podcast is how global business and global society borrow ideas and methods from one another. This week, we’re looking at an approach that was developed in the business world that’s proving hugely effective in humanitarian work. It’s called human-centered design. And some say it might work even better in the social sector than it did in large corporations. We’ll get back to that later….(More)”

 

The big questions for research using personal data


 at Royal Society’s “Verba”: “We live in an era of data. The world is generating 1.7 million billion bytes of data every minute and the total amount of global data is expected to grow 40% year on year for the next decade (PDF). In 2003 scientists declared the mapping of the human genome complete. It took over 10 years and cost $1billion – today it takes mere days and can be done at a fraction of the cost.

Making the most of the data revolution will be key to future scientific and economic progress. Unlocking the value of data by improving the way that we collect, analyse and use data has the potential to improve lives across a multitude of areas, ranging from business to health, and from tackling climate change to aiding civic engagement. However, its potential for public benefit must be balanced against the need for data to be used intelligently and with respect for individuals’ privacy.

Getting regulation right

The UK Data Protection Act was transposed into UK law following the 1995 European Data Protection Directive. This was at a time before wide-spread use of internet and smartphones. In 2012, recognising the pace of technological change, the European Commission proposed a comprehensive reform of EU data protection rules including a new Data Protection Regulation that would update and harmonise these rules across the EU.

The draft regulation is currently going through the EU legislative process. During this, the European Parliament has proposed changes to the Commission’s text. These changes have raised concerns for researchers across Europe that the Regulation could risk restricting the use of personal data for research which could prevent much vital health research. For example, researchers currently use these data to better understand how to prevent and treat conditions such as cancer, diabetes and dementia. The final details of the regulation are now being negotiated and the research community has come together to highlight the importance of data in research and articulate their concerns in a joint statement, which the Society supports.

The Society considers that datasets should be managed according to a system of proportionate governance. Personal data should only be shared if it is necessary for research with the potential for high public value and should be proportionate to the particular needs of a research project. It should also draw on consent, authorisation and safe havens – secure sites for databases containing sensitive personal data that can only be accessed by authorised researchers – as appropriate…..

However, many challenges remain that are unlikely to be resolved in the current European negotiations. The new legislation covers personal data but not anonymised data, which are data that have had information that can identify persons removed or replaced with a code. The assumption is that anonymisation is a foolproof way to protect personal identity. However, there have been examples of reidentification from anonymised data and computer scientists have long pointed out the flaws of relying on anonymisation to protect an individual’s privacy….There is also a risk of leaving the public behind with lack of information and failed efforts to earn trust; and it is clear that a better understanding of the role of consent and ethical governance is needed to ensure the continuation of cutting edge research which respects the principles of privacy.

These are problems that will require attention, and questions that the Society will continue to explore. …(More)”

Syrians discover new use for mobile phones – finding water


Magdalena Mis at Reuters: “Struggling with frequent water cuts, residents of Syria‘s battered city of Aleppo have a new way to find the water needed for their daily lives – an interactive map on mobile phones.

The online map, created by the Red Cross and accessible through mobile phones with 3G technology, helps to locate the closest of over 80 water points across the divided city of 2 million and guides them to it using a Global Positioning System.

“The map is very simple and works on every phone, and everybody now has access to a mobile phone with 3G,” International Committee of the Red Cross (ICRC) spokesman Pawel Krzysiek told the Thomson Reuters Foundation in a phone interview from Damascus on Wednesday.

“The important thing is that it’s not just a map – which many people may not know how to read – it’s the GPS that’s making a difference because people can actually be guided to the water point closest to them,” he said.

Aleppo was Syria’s most populated city and commercial hub before the civil war erupted in 2011, but many areas have been reduced to rubble and the city has been carved up between government forces and various insurgent groups.

Water cuts are a regular occurrence, amounting to about two weeks each month, and the infrastructure is on the brink of collapse, Krzysiek said.

The water supply was restored on Wednesday after a four-day cut caused by damage to the main power line providing electricity to some 80 percent of households, Krzysiek said.

More cuts are likely because fighting is preventing engineers from repairing the power line, and diesel, used for standby generators, may run out, he added….

Krzysiek said the ICRC started working on the map after a simple version created for engineers was posted on its Facebook page in the summer, sparking a wave of comments and requests.

“Suddenly people started to share this map and were sending comments on how to improve it and asking for a new, more detailed one.”

Krzysiek said that about 140,000 people were using the old version of the map and 20,000 had already used the new version, launched on Monday…(More)”

Weak States, Poor Countries


Angus Deaton in Project Syndicate: “Europeans tend to feel more positively about their governments than do Americans, for whom the failures and unpopularity of their federal, state, and local politicians are a commonplace. Yet Americans’ various governments collect taxes and, in return, provide services without which they could not easily live their lives.

Americans, like many citizens of rich countries, take for granted the legal and regulatory system, the public schools, health care and social security for the elderly, roads, defense and diplomacy, and heavy investments by the state in research, particularly in medicine. Certainly, not all of these services are as good as they might be, nor held in equal regard by everyone; but people mostly pay their taxes, and if the way that money is spent offends some, a lively public debate ensues, and regular elections allow people to change priorities.

All of this is so obvious that it hardly needs saying – at least for those who live in rich countries with effective governments. But most of the world’s population does not.

In much of Africa and Asia, states lack the capacity to raise taxes or deliver services. The contract between government and governed – imperfect in rich countries – is often altogether absent in poor countries. The New York cop was little more than impolite (and busy providing a service); in much of the world, police prey on the people they are supposed to protect, shaking them down for money or persecuting them on behalf of powerful patrons.

Even in a middle-income country like India, public schools and public clinics face mass (unpunished) absenteeism. Private doctors give people what (they think) they want – injections, intravenous drips, and antibiotics – but the state does not regulate them, and many practitioners are entirely unqualified.

Throughout the developing world, children die because they are born in the wrong place – not of exotic, incurable diseases, but of the commonplace childhood illnesses that we have known how to treat for almost a century. Without a state that is capable of delivering routine maternal and child health care, these children will continue to die.

Likewise, without government capacity, regulation and enforcement do not work properly, so businesses find it difficult to operate. Without properly functioning civil courts, there is no guarantee that innovative entrepreneurs can claim the rewards of their ideas.

The absence of state capacity – that is, of the services and protections that people in rich countries take for granted – is one of the major causes of poverty and deprivation around the world. Without effective states working with active and involved citizens, there is little chance for the growth that is needed to abolish global poverty.

Unfortunately, the world’s rich countries currently are making things worse. Foreign aid – transfers from rich countries to poor countries – has much to its credit, particularly in terms of health care, with many people alive today who would otherwise be dead. But foreign aid also undermines the development of local state capacity….

One thing that we can do is to agitate for our own governments to stop doing those things that make it harder for poor countries to stop being poor. Reducing aid is one, but so is limiting the arms trade, improving rich-country trade and subsidy policies, providing technical advice that is not tied to aid, and developing better drugs for diseases that do not affect rich people. We cannot help the poor by making their already-weak governments even weaker….(More)”