Sector: health

Massive Ebola data site planned to combat outbreaks

Curated on Posted on by Stefaan Verhulst

Amy Maxmen at Nature: “More than 11,000 people died when Ebola tore through West Africa between 2014 and 2016, and yet clinicians still lack data that would enable them to reliably identify the disease when a person first walks into a clinic. To fill that gap and others before the next outbreak hits, researchers are developing a platform to organize and share Ebola data that have so far been scattered beyond reach.

The information system is coordinated by the Infectious Diseases Data Observatory (IDDO), an international research network based at the University of Oxford, UK, and is expected to launch by the end of the year. …

During the outbreak, for example, a widespread rumour claimed that the plague was an experiment conducted by the West, which led some people to resist going to clinics and helped Ebola to spread.

Merson and her collaborators want to avoid the kind of data fragmentation that hindered efforts to stop the outbreak in Liberia, Guinea and Sierra Leone. As the Ebola crisis was escalating in October 2014, she visited treatment units in the three countries to advise on research. Merson found tremendous variation in practices, which complicated attempts to merge and analyse the information. For instance, some record books listed lethargy and hiccups as symptoms, whereas others recorded fatigue but not hiccups.

“People were just collecting what they could,” she recalls. Non-governmental organizations “were keeping their data private; academics take a year to get it out; and West Africa had set up surveillance but they were siloed from the international systems”, she says. …

In July 2015, the IDDO received pilot funds from the UK charity the Wellcome Trust to pool anonymized data from the medical records of people who contracted Ebola — and those who survived it — as well as data from clinical trials and public health projects during outbreaks in West Africa, Uganda and the Democratic Republic of Congo. The hope is that a researcher could search for data to help in diagnosing, treating and understanding the disease. The platform would also provide a home for new data as they emerge. A draft research agenda lists questions that the information might answer, such as how long the virus can survive outside the human body, and what factors are associated with psychological issues in those who survive Ebola.

One sensitive issue is deciding who will control the data. …It’s vital that these discussions happen now, in a period of relative calm, says Jeremy Farrar, director of the Wellcome Trust in London. When the virus emerges again, clinicians, scientists, and regulatory boards will need fast access to data so as not to repeat mistakes made last time. “We need to sit down and make sure we have a data platform in place so that we can respond to a new case of Ebola in hours and days, and not in months and years,” he says. “A great danger is that the world will move on and forget the horror of Ebola in West Africa.”…(More)”

The Case for Sharing All of America’s Data on Mosquitoes

Curated on Posted on by Stefaan Verhulst

Ed Yong in the Atlantic: “The U.S. is sitting on one of the largest data sets on any animal group, but most of it is inaccessible and restricted to local agencies….For decades, agencies around the United States have been collecting data on mosquitoes. Biologists set traps, dissect captured insects, and identify which species they belong to. They’ve done this for millions of mosquitoes, creating an unprecedented trove of information—easily one of the biggest long-term attempts to monitor any group of animals, if not the very biggest.

The problem, according to Micaela Elvira Martinez from Princeton University and Samuel Rund from the University of Notre Dame, is that this treasure trove of data isn’t all in the same place, and only a small fraction of it is public. The rest is inaccessible, hoarded by local mosquito-control agencies around the country.

Currently, these agencies can use their data to check if their attempts to curtail mosquito populations are working. Are they doing enough to remove stagnant water, for example? Do they need to spray pesticides? But if they shared their findings, Martinez and Rund say that scientists could do much more. They could better understand the ecology of these insects, predict the spread of mosquito-borne diseases like dengue fever or Zika, coordinate control efforts across states and counties, and quickly spot the arrival of new invasive species.

That’s why Martinez and Rund are now calling for the creation of a national database of mosquito records that anyone can access. “There’s a huge amount of taxpayer investment and human effort that goes into setting traps, checking them weekly, dissecting all those mosquitoes under a microscope, and tabulating the data,” says Martinez. “It would be a big bang for our buck to collate all that data and make it available.”

Martinez is a disease modeler—someone who uses real-world data to build simulations that reveal how infections rise, spread, and fall. She typically works with childhood diseases like measles and polio, where researchers are almost spoiled for data. Physicians are legally bound to report any cases, and the Centers for Disease Control and Prevention (CDC) compiles and publishes this information as a weekly report.

The same applies to cases of mosquito-borne diseases like dengue and Zika, but not to populations of the insects themselves. So, during last year’s Zika epidemic, when Martinez wanted to study the Aedes aegypti mosquito that spreads the disease, she had a tough time. “I was really surprised that I couldn’t find data on Aedes aegypti numbers,” she says. Her colleagues explained that scientists use climate variables like temperature and humidity to predict where mosquitoes are going to be abundant. That seemed ludicrous to her, especially since organizations collect information on the actual insects. It’s just that no one ever gathers those figures together….

Together with Rund and a team of undergraduate students, she found that there are more than 1,000 separate agencies in the United States that collect mosquito data—at least one in every county or jurisdiction. Only 152 agencies make their data publicly available in some way. The team collated everything they could find since 2009, and ended up with information about more than 15 million mosquitoes. Imagine what they’d have if all the datasets were open, especially since some go back decades.

A few mosquito-related databases do exist, but none are quite right. ArboNET, which is managed by the CDC and state health departments, mainly stores data about mosquito-borne diseases, and whatever information it has on the insects themselves isn’t precise enough in either time or space to be useful for modeling. MosquitoNET, which was developed by the CDC, does track mosquitoes, but “it’s a completely closed system, and hardly anyone has access to it,” says Rund. The Smithsonian Institution’s VectorMap is better in that it’s accessible, “but it lacks any real-time data from the continental United States,” says Rund. “When I checked a few months ago, it had just one record of Aedes aegypti since 2013.”…

Some scientists who work on mosquito control apparently disagree, and negative reviews have stopped Martinez and Rund from publishing their ideas in prominent academic journals. (For now, they’ve uploaded a paper describing their vision to the preprint repository bioRxiv.) “Some control boards say: What if people want to sue us because we’re showing that they have mosquito vectors near their homes, or if their house prices go down?” says Martinez. “And one mosquito-control scientist told me that no one should be able to work with mosquito data unless they’ve gone out and trapped mosquitoes themselves.”…

“Data should be made available without having to justify exactly what’s going to be done with it,” Martinez says. “We should put it out there for scientists to start unlocking it. I think there are a ton of biologists who will come up with cool things to do.”…(More)”.

Inside the Lab That’s Quantifying Happiness

Curated on Posted on by Stefaan Verhulst

Rowan Jacobsen at Outside: “In Mississippi, people tweet about cake and cookies an awful lot; in Colorado, it’s noodles. In Mississippi, the most-tweeted activity is eating; in Colorado, it’s running, skiing, hiking, snowboarding, and biking, in that order. In other words, the two states fall on opposite ends of the behavior spectrum. If you were to assign a caloric value to every food mentioned in every tweet by the citizens of the United States and a calories-burned value to every activity, and then totaled them up, you would find that Colorado tweets the best caloric ratio in the country and Mississippi the worst.

Sure, you’d be forgiven for doubting people’s honesty on Twitter. On those rare occasions when I destroy an entire pint of Ben and Jerry’s, I most assuredly do not tweet about it. Likewise, I don’t reach for my phone every time I strap on a pair of skis.

And yet there’s this: Mississippi has the worst rate of diabetes and heart disease in the country and Colorado has the best. Mississippi has the second-highest percentage of obesity; Colorado has the lowest. Mississippi has the worst life expectancy in the country; Colorado is near the top. Perhaps we are being more honest on social media than we think. And perhaps social media has more to tell us about the state of the country than we realize.

That’s the proposition of Peter Dodds and Chris Danforth, who co-direct the University of Vermont’s Computational Story Lab, a warren of whiteboards and grad students in a handsome brick building near the shores of Lake Champlain. Dodds and Danforth are applied mathematicians, but they would make a pretty good comedy duo. When I stopped by the lab recently, both were in running clothes and cracking jokes. They have an abundance of curls between them and the wiry energy of chronic thinkers. They came to UVM in 2006 to start the Vermont Complex Systems Center, which crunches big numbers from big systems and looks for patterns. Out of that, they hatched the Computational Story Lab, which sifts through some of that public data to discern the stories we’re telling ourselves. “It took us a while to come up with the name,” Dodds told me as we shotgunned espresso and gazed into his MacBook. “We were going to be the Department of Recreational Truth.”

This year, they teamed up with their PhD student Andy Reagan to launch the Lexicocalorimeter, an online tool that uses tweets to compute the calories in and calories out for every state. It’s no mere party trick; the Story Labbers believe the Lexicocalorimeter has important advantages over slower, more traditional methods of gathering health data….(More)”.

We need a safe space for policy failure

Curated on Posted on by Stefaan Verhulst

Catherine Althaus & David Threlfall in The Mandarin: “Who remembers Google Schemer, the Apple Pippin, or Microsoft Zune? No one — and yet such no-go ideas didn’t hold back these prominent companies. In IT, such high profile failures are simply steps on the path to future success. When a start-up or major corporate puts a product onto the market they identify the kinks in their invention immediately, design a fix, and release a new version. If the whole idea falls flat — and who ever listened to music on a Zune instead of an iPod? — the next big thing is just around the corner. Learning from failure is celebrated as a key feature of innovation.

But in the world of public policy, this approach is only now creeping into our collective consciousness. We tread ever so lightly.

Drug policy, childcare reform, or information technology initiatives are areas where innovation could provide policy improvements, but who is going to be a first-mover innovator in this policy area without fearing potential retribution should anything go wrong?…

Public servants don’t have the luxury of ‘making a new version’ without fear of blame or retribution. Critically, their process often lacks the ability to test assumptions before delivery….

The most persuasive or entertaining narrative often trumps the painstaking work — and potential missteps — required to build an evidence base to support political and policy decisions. American academics Elizabeth Shanahan, Mark McBeth and Paul Hathaway make a remarkable claim regarding the power of narrative in the policy world: “Research in the field of psychology shows that narratives have a stronger ability to persuade individuals and influence their beliefs than scientific evidence does.” If narrative and stories overtake what we normally accept as evidence, then surely we ought to be taking more notice of what the narratives are, which we choose and how we use them…

Failing the right way

Essential policy spheres such as health, education and social services should benefit from innovative thinking and theory testing. What is necessary in these areas is even more robust attention to carefully calibrated and well-thought through experimentation. Rewards need to outweigh risks, and risks need to be properly managed. This has always been the case in clinical trials in medicine. Incredible breakthroughs in medical practice made throughout the 20th century speak to the success of this model. Why should policymaking suffer from a timid inertia given the potential for similar success?

An innovative approach, focused on learning while failing right, will certainly require a shift in thinking. Every new initiative will need to be designed in a holistic way, to not just solve an issue but learn from every stage of the design and delivery process. Evaluation doesn’t follow implementation but instead becomes part of the entire cycle. A small-scale, iterative approach can then lead to bigger successes down the track….(More)”.

Ireland Opens E-Health Open Data Portal

Curated on Posted on by Stefaan Verhulst

Adi Gaskell at HuffPost: “… an open data portal has been launched by eHealth Ireland.  The portal aims to bring together some 300 different open data sources into one place, making it easier to find data from across the Irish Health Sector.

The portal includes data from a range of sources, including statistics on hospital day and inpatient cases, waiting list statistics and information around key new digital initiatives.

Open data

The resource features datasets from both the Department of Health and HealthLink, so the team believe that the data is of the highest quality, and also compliant with the Open Health Data Policy.  This ensures that the approach taken with the release of data is consistent and in accordance with national and international guidelines.

“I am delighted to welcome the launch of the eHealth Ireland Open Data Portal today. The aim of Open Data is twofold; on the one hand facilitating transparency of the Public Sector and on the other providing a valuable resource that can drive innovation. The availability of Open Data can empower citizens and support clinicians, care providers, and researchers make better decisions, spur new innovations and identify efficiencies while ensuring that personal data remains confidential,” Richard Corbridge, CIO at the Health Service Executive says.

Data from both HealthLink and the National Treatment Purchase Fund (NTPF) will be uploaded to the portal each month, with new datasets due to be added on a regular basis….

The project follows a number of clearly defined Open Health Data Principles that are designed to support the health service in the provision of better patient care and in the support of new innovations in the sector, all whilst ensuring that patient data is secured and governed appropriately…(More)”.

How Can Blockchain Technology Help Government Drive Economic Activity?

Curated on Posted on by Stefaan Verhulst

Thomas Hardjono and Pete Teigen providing “A Blueprint Discussion on Identity“: Data breaches, identity theft, and trust erosion are all identity-related issues that citizens and government organizations face with increased frequency and magnitude. The rise of blockchain technology, and related distributed ledger technology, is generating significant interest in how a blockchain infrastructure can enable better identity management across a variety of industries.  Historically, governments have taken the primary role in issuing certain types of identities (e.g. social security numbers, driver licenses, and passports) based on strong authentication proofing of individuals using government-vetted documentation – a process often referred to as on-boarding. This identity proofing and on-boarding process presents a challenge to government because it is still heavily paper-based, making it cumbersome, time consuming and dependent on siloed, decades old, and inefficient systems.

Another aspect of the identity challenge is the risk of compromising an individual’s digital identifiers and government-issued credentials through identity theft. With so many vital services (e.g. banking, health services, transport, residency) dependent on trusted, government-vetted credentials, any compromise of that identity can result in a significant negative impact to the individual and be difficult to repair. Compounding the problem, many instances of identity theft go undetected and only discovered after damage is done.

Increasing the efficiency of the identity vetting process while also enhancing transparency would help mitigate those identity challenges.  Blockchain technology promises to do just that. Through the use of multiple computer systems (nodes) that are interconnected in a peer-to-peer (P2P) network, a shared common view of the information in the network ensures synchronicity of agreed data. A trusted ledger then exists in a distributed manner across the network that inherently is accountable to all network participants, thereby providing transparency and trustworthiness.

Using that trusted distributed ledger, identity-related data vetted by one Government entity and including that data’s location (producing a link in the chain) can be shared with other members of the network as needed — allowing members to instantaneously accept an identity without the need to duplicate the identity vetting process.  The more sophisticated blockchain systems possess this “record-link-fetch” feature that  is inherent in  the blockchain system’s building blocks.  Additional efficiency enhancing features allow downstream processes using that identity assertion as automated input to enable “smart contracts”, discussed below.

Thus, the combination of Government vetting of individual data, together with the embedded transparency and accountability capabilities of blockchain systems, allow relying parties (e.g. businesses, online merchants, individuals, etc.) to obtain higher degrees of assurance regarding the identity of other parties with whom they are conducting transactions…..

Identity and membership management solutions already exist and can be applied to private (permissioned) blockchain systems. Features within these solutions should be evaluated for their suitability for blockchain systems.  Specifically, these four steps can enable government to start in suing blockchain to address identity challenges:

  1. Evaluate existing identity and membership management solutions in order to identify features that apply to permissioned blockchain systems in the short term.
  2. Experiment with integrating these existing solutions with open source blockchain implementations.
  3. Create a roadmap (with a 2-3 year horizon) for identity and membership management for smart contracts within permissioned blockchains.
  4. Develop a long term plan (a 5 year horizon) for addressing identity and membership management for permissionless (public) blockchain systems. Here again, use open source blockchain implementations as the basis to understand the challenges in the identity space for permissionless blockchains….(More)”.

Design Thinking for the Greater Good

Curated on Posted on by Stefaan Verhulst

New Book by Jeanne Liedtka, Randy Salzman, and Daisy Azer:  “Facing especially wicked problems, social sector organizations are searching for powerful new methods to understand and address them. Design Thinking for the Greater Good goes in depth on both the how of using new tools and the why. As a way to reframe problems, ideate solutions, and iterate toward better answers, design thinking is already well established in the commercial world. Through ten stories of struggles and successes in fields such as health care, education, agriculture, transportation, social services, and security, the authors show how collaborative creativity can shake up even the most entrenched bureaucracies—and provide a practical roadmap for readers to implement these tools.

The design thinkers Jeanne Liedtka, Randy Salzman, and Daisy Azer explore how major agencies like the Department of Health and Human Services and the Transportation and Security Administration in the United States, as well as organizations in Canada, Australia, and the United Kingdom, have instituted principles of design thinking. In each case, these groups have used the tools of design thinking to reduce risk, manage change, use resources more effectively, bridge the communication gap between parties, and manage the competing demands of diverse stakeholders. Along the way, they have improved the quality of their products and enhanced the experiences of those they serve. These strategies are accessible to analytical and creative types alike, and their benefits extend throughout an organization. This book will help today’s leaders and thinkers implement these practices in their own pursuit of creative solutions that are both innovative and achievable….(More)”.

Data Africa

Curated on Posted on by Stefaan Verhulst

“Data Africa is an open data platform designed to provide information on key themes for research and development such as: agriculture, climate, poverty and child health across Sub-Saharan Africa at the sub-national level. The main goal of the online tool is to present the themes to a wide, even non-technical audience through easily accessible visual narratives.

In its first stage, the platform is focused on national and sub-national level data for 13 countries:

  • Burkina Faso
  • Ethiopia
  • Ghana
  • Kenya
  • Malawi
  • Mali
  • Mozambique
  • Nigeria
  • Rwanda
  • Senegal
  • Tanzania
  • Uganda
  • Zambia

Over time, we anticipate expanding the coverage of the platform with additional countries and increasing the amount of data available through the platform….

The data contained in the online tool draws from a variety of sources, including:

The Implementation of Open Data in Indonesia

Curated on Posted on by Stefaan Verhulst

Paper by Dani Gunawan and Amalia Amalia: “Nowadays, public demands easy access to nonconfidential government data, such as public digital information on health, industry, and culture that can be accessed on the Internet. This will lead departments within government to be efficient and more transparent. As the results, rapid development of applications will solve citizens’ problems in many sectors. One Data Initiatives is the prove that the Government of Indonesia supports data transparency. This research investigates the implementation of open data in Indonesia based on Tim BernersLee five-star rating and open stage model by Kalampokis. The result shows that mostly data in Indonesia is freely available in the Internet, but most of them are not machine-readable and do not support non-proprietary format. The drawback of Indonesia’s open data is lack of ability to link the existing data with other data sources. Therefore, Indonesia is still making initial steps with data inventories and beginning to publish key datasets of public interest…(More)”

Rage against the machines: is AI-powered government worth it?

Curated on Posted on by Stefaan Verhulst

Maëlle Gavet at the WEF: “…the Australian government’s new “data-driven profiling” trial for drug testing welfare recipients, to US law enforcement’s use of facial recognition technology and the deployment of proprietary software in sentencing in many US courts … almost by stealth and with remarkably little outcry, technology is transforming the way we are policed, categorized as citizens and, perhaps one day soon, governed. We are only in the earliest stages of so-called algorithmic regulation — intelligent machines deploying big data, machine learning and artificial intelligence (AI) to regulate human behaviour and enforce laws — but it already has profound implications for the relationship between private citizens and the state….

Some may herald this as democracy rebooted. In my view it represents nothing less than a threat to democracy itself — and deep scepticism should prevail. There are five major problems with bringing algorithms into the policy arena:

  1. Self-reinforcing bias…
  2. Vulnerability to attack…
  3. Who’s calling the shots?…
  4. Are governments up to it?…
  5. Algorithms don’t do nuance….

All the problems notwithstanding, there’s little doubt that AI-powered government of some kind will happen. So, how can we avoid it becoming the stuff of bad science fiction? To begin with, we should leverage AI to explore positive alternatives instead of just applying it to support traditional solutions to society’s perceived problems. Rather than simply finding and sending criminals to jail faster in order to protect the public, how about using AI to figure out the effectiveness of other potential solutions? Offering young adult literacy, numeracy and other skills might well represent a far superior and more cost-effective solution to crime than more aggressive law enforcement. Moreover, AI should always be used at a population level, rather than at the individual level, in order to avoid stigmatizing people on the basis of their history, their genes and where they live. The same goes for the more subtle, yet even more pervasive data-driven targeting by prospective employers, health insurers, credit card companies and mortgage providers. While the commercial imperative for AI-powered categorization is clear, when it targets individuals it amounts to profiling with the inevitable consequence that entire sections of society are locked out of opportunity….(More)”.

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