Stefaan Verhulst

Value public information so we can trust it, rely on it and use it

Curated on March 3, 2016August 3, 2018 by Stefaan Verhulst

Speech by David Fricker, the director general of the National Archives of Australia: “No-one can deny that we are in an age of information abundance. More and more we rely on information from a variety of sources and channels. Digital information is seductive, because it’s immediate, available and easy to move around. But digital information can be used for nefarious purposes. Social issues can be at odds with processes of government in this digital age. There is a tension between what is the information, where it comes from and how it’s going to be used.

How do we know if the information has reached us without being changed, whether that’s intentional or not?

How do we know that government digital information will be the authoritative source when the pace of information exchange is so rapid? In short, how do we know what to trust?

“It’s everyone’s responsibly to contribute to a transparent government, and that means changes in our thinking and in our actions.”

These are big questions, because there is a complexity about digital information that we don’t have with paper. Information has never been more complicated, but also never more important. There’s no going back — nor would we want to — but it means that time is ticking, because valuable government information is being lost — as I speak. I want you to share my sense of urgency about digital information, and act on what I’m going to say today.

Consider the challenges and risks that come with the digital age: what does it really mean to have transparency and integrity of government in today’s digital environment?…

What does the digital age mean for government? Government should be delivering services online, which means thinking about location, timeliness and information accessibility. It’s about getting public-sector data out there, into the public, making it available to fuel the digital economy. And it’s about a process of change across government to make sure that we’re breaking down all of those silos, and the duplication and fragmentation which exist across government agencies in the application of information, communications, and technology…..

The digital age is about the digital economy, it’s about rethinking the economy of the nation through the lens of information that enables it. It’s understanding that a nation will be enriched, in terms of culture life, prosperity and rights, if we embrace the digital economy. And that’s a weighty responsibility. But the responsibility is not mine alone. It’s a responsibility of everyone in the government who makes records in their daily work. It’s everyone’s responsibly to contribute to a transparent government. And that means changes in our thinking and in our actions….

What has changed about democracy in the digital age? Once upon a time if you wanted to express your anger about something, you might write a letter to the editor of the paper, to the government department, or to your local member and then expect some sort of an argument or discussion as a response. Now, you can bypass all of that. You might post an inflammatory tweet or blog, your comment gathers momentum, you pick the right hashtag, and off we go. It’s all happening: you’re trending on Twitter…..

If I turn to transparency now, at the top of the list is the basic recognition that government information is public information. The information of the government belongs to the people who elected that government. It’s a fundamental of democratic values. It also means that there’s got to be more public participation in the development of public policy, which means if you’re going to have evidence-based, informed, policy development; government information has to be available, anywhere, anytime….

Good information governance is at the heart of managing digital information to provide access to that information into the future — ready access to government information is vital for transparency. Only when information is digital and managed well can government share it effectively with the Australian community, to the benefit of society and the economy.

There are many examples where poor information management, or poor information governance, has led to failures — both in the private and public sectors. Professor Peter Shergold’s recent report, Learning from Failure, why large government policy initiatives have gone so badly wrong in the past and how the chances of success in the future can be improved, highlights examples such as the Home Insulation Program, the NBN and Building the Education Revolution….(Full Speech)

Ideas Help No One on a Shelf. Take Them to the World

Curated on March 2, 2016August 3, 2018 by Stefaan Verhulst

Tina Rosenberg at The New York Times: “Have you thought of a clever product to mitigate climate change? Did you invent an ingenious gadget to light African villages at night? Have you come up with a new kind of school, or new ideas for lowering the rate of urban shootings?

Thanks, but we have lots of those.

Whatever problem possesses you, we already have plenty of ways to solve it. Many have been rigorously tested and have a lot of evidence behind them — and yet they’re sitting on a shelf.

So don’t invent something new. If you want to make a contribution, choose one of those ideas — and spread it.

Spreading an idea can mean two different things. One is to take something that’s working in one place and introduce it somewhere else. If you want to reduce infant mortality in Cleveland, why not try what’s working in Baltimore?

Well, you might not know about what’s working because there’s no quick system for finding it.

Even when a few people do search out the answer, innovative ideas don’t spread by themselves. To become well known, they require effort from their originators. For example, a Bogotá, Colombia, maternity hospital invented Kangaroo Care — a method of keeping premature babies warm by strapping them 24/7 to Mom’s chest. It saved a lot of lives in Bogotá. But what allowed it to save lives around the world was a campaign to spread it to other countries.

The Colombians established Fundación Canguro and got grants from wealthy countries to bring groups of doctors and nurses from all over to visit Bogotá for two or three weeks. Once the visitors had gone back and set up a program in their hospital, the foundation loaned them a doctor and nurse to help get them started. Save the Children now leads a global partnership to spread Kangaroo Care, with the goal of reaching half the world.

In short, this work requires dedicated organizations, a smart program and lots of money.

The other meaning of spreading an idea is creating ways to get new inventions out to people who need them.

“When I talk to college students or anyone who’s thinking about entrepreneurship or targeting global poverty, the gadget is where 99 percent of people start thinking,” said Nicholas Fusso, the director of D-Prize (its slogan: “Distribution is development”). “That’s important — but the biggest problems in the poverty world aren’t a lack of gadgets or new products. It’s figuring out how people can have access to them.” So D-Prize gives seed money, in chunks of $10,000 to $20,000, to tiny new organizations that have good ideas for how to distribute useful things.

This analysis may be familiar to regular readers of Fixes. Indeed, the first Fixes column, more than five years ago, focused on distribution: getting health care to people in rural Africa by putting health care workers on motorcycles and keeping the bikes running….

Philanthropists and government aid agencies are only starting to get interested in the challenges of distribution — one new philanthropy that does have this focus is Good Ventures. As for academia, it still rewards invention almost exclusively. “There’s a lot of attention and award-giving and prize-giving and credit to people who come up with fancy new ideas instead of reaching people and having impact,” said Brodbar. “The incentives aren’t aligned. The culture of social entrepreneurship needs to change.”

Recognizing the true value of spreading an idea would also allow people who aren’t inventors (which is most of us) to get involved in social change. “The notion that if you want to engage in [social entrepreneurship] you have to have the big idea does a disservice to this space and people who want to play a role in it,” said Brodbar. “It’s a much wider front door.”…(More)

Citizen Science and the Flint Water Crisis

Curated on March 2, 2016August 15, 2018 by Stefaan Verhulst

The Wilson Center’s Commons Lab: “In April 2014, the city of Flint, Michigan decided to switch its water supply source from the Detroit water system to a cheaper alternative, the Flint River. But in exchange for the cheaper price tag, the Flint residents paid a greater price with one of the worst public health crises of the past decade.

Despite concerns from Flint citizens about the quality of the water, the Michigan Department of Environmental Quality repeatedly attributed the problem to the plumbing system. It was 37-year-old mother of four, LeeAnne Walters who, after noticing physical and behavioral changes in her children and herself, set off a chain of events that exposed the national scandal. Eventually, with the support of Dr. Marc Edwards, an environmental engineering professor at Virginia Tech (VT), Walters discovered lead concentration levels of 13,200 parts per billion in her water, 880 times the maximum concentration allowed by law and more than twice the level the Environmental Protection Agency considers to be hazardous waste.

Citizen science emerged as an important piece of combating the Flint water crisis. Alarmed by the government’s neglect and the health issues spreading all across Flint, Edwards and Walters began the Flint Water Study, a collaboration between the Flint residents and research team from VT. Using citizen science, the VT researchers provided the Flint residents with kits to sample and test their homes’ drinking water and then analyzed the results to unearth the truth behind Flint’s water quality.

The citizen-driven project illustrates the capacity for nonprofessional scientists to use science in order to address problems that directly affect themselves and their community. While the VT team needed the Flint residents to provide water samples, the Flint residents in turn needed the VT team to conduct the analysis. In short, both parties achieved mutually beneficial results and the partnership helped expose the scandal. Surprisingly, the “traditional” problems associated with citizen science, including the inability to mobilize the local constituent base and the lack of collaboration between citizens and professional scientists, were not the obstacles in Flint….(More)”

In Peru, trackable vultures are helping authorities find illegal garbage dumps

Curated on March 2, 2016October 10, 2018 by Stefaan Verhulst

Springwise: “Peru’s black vultures are well known locally for their natural aptitude for garbage location. They don’t have to search too hard, since much of the garbage produced by the city of Lima is dumped illegally and ends up in the Pacific ocean. Now, the Ministry of the Environment has launched the Gallinazo Avisa campaign — meaning Vultures Warn — to clean up the city. It is using the vultures to its advantage, by fitting a flock of them with GoPros, which collect real-time GPS data, and enable the people to find the illegal dumps across the city.

The scheme is being run with the help of the Museum of Natural History and a local university, who had already tagged vultures to understand their seasonal movements. Each of the birds has been given a name and character, and their movements can be followed in real-time through an interactive map. Promotional videos have been created, which place the vultures in a filmic narrative as misunderstood heroes. Not only does the GPS data enable the location of garbage, the footage collected is also having a two-fold effect. First, it is educating the citizens about the repercussions of illegal dumping, and second, it is improving the reputation of the vultures by transforming them into allies of the people….(More)

vulturewarn-1-garbage-animal-bird-data-location

Ebola: A Big Data Disaster

Curated on March 2, 2016August 3, 2018 by Stefaan Verhulst

Study by Sean Martin McDonald: “…undertaken with support from the Open Society Foundation, Ford Foundation, and Media Democracy Fund, explores the use of Big Data in the form of Call Detail Record (CDR) data in humanitarian crisis.

It discusses the challenges of digital humanitarian coordination in health emergencies like the Ebola outbreak in West Africa, and the marked tension in the debate around experimentation with humanitarian technologies and the impact on privacy. McDonald’s research focuses on the two primary legal and human rights frameworks, privacy and property, to question the impact of unregulated use of CDR’s on human rights. It also highlights how the diffusion of data science to the realm of international development constitutes a genuine opportunity to bring powerful new tools to fight crisis and emergencies.

Analysing the risks of using CDRs to perform migration analysis and contact tracing without user consent, as well as the application of big data to disease surveillance is an important entry point into the debate around use of Big Data for development and humanitarian aid. The paper also raises crucial questions of legal significance about the access to information, the limitation of data sharing, and the concept of proportionality in privacy invasion in the public good. These issues hold great relevance in today’s time where big data and its emerging role for development, involving its actual and potential uses as well as harms is under consideration across the world.

The paper highlights the absence of a dialogue around the significant legal risks posed by the collection, use, and international transfer of personally identifiable data and humanitarian information, and the grey areas around assumptions of public good. The paper calls for a critical discussion around the experimental nature of data modelling in emergency response due to mismanagement of information has been largely emphasized to protect the contours of human rights….

See Sean Martin McDonald – “Ebola: A Big Data Disaster” (PDF).

Informing the future of the Federal Front Door

Curated on March 2, 2016August 3, 2018 by Stefaan Verhulst

New report and microsite informing the Federal Front Door project: “Recent research has made clear that we as agencies within the federal government need to improve the public’s interactions with the government across the board. Overall, Americans’ satisfaction with federal services is dropping, and currently ranks below their satisfaction with private-sector and local government services . Our team believes that by identifying broad trends in people’s perceptions of and interactions with the government, we can identify and create cross-agency services and resources to improve how the government interacts with the public. We’re starting to explore projects that would increase people’s satisfaction with their interactions with the government. These include efforts to improve transparency in service design (the conscious coordination of people, infrastructure, and materials to improve the user’s experience of a service) and promote information sharing among agencies.

Our team believes that by identifying broad trends in people’s perceptions of and interactions with the government, we can identify and create cross-agency services and resources to improve how the government interacts with the public. We’re starting to explore projects that would increase people’s satisfaction with their interactions with the government. These include efforts to improve transparency in service design (the conscious coordination of people, infrastructure, and materials to improve the user’s experience of a service) and promote information sharing among agencies.

As a starting point, we conducted extensive research on different people’s views of and interactions with federal agencies. This report details our findings and recommendations. This research is not intended to be a critique of specific government agencies. Rather, our aim was to better understand the public’s overall experience interacting with the federal government and their attitudes about sharing information with government agencies. The examples we’ve provided illustrate patterns seen across numerous agencies….

We structured our research so we could better understand the following questions:

What touch points do people think they have with the federal government?
What touch points do people actually have with the federal government?
What are people’s pain points in interacting with the federal government?
Are people taking advantage of the government services they are eligible for? Why or why not?
How do people feel about sharing their personal information with the government?…

The Governance Data Alliance

Curated on March 1, 2016August 3, 2018 by Stefaan Verhulst

WORK STREAMS

Knowledge sharing and collaboration among data producers.

This work stream supports peer exchange and technical assistance between groups within (and beyond) the Alliance on topics ranging from research methodology design and data analysis tools to data storage, data visualization techniques, and managing government feedback.
Publishing and promoting a governance data dashboard that aggregates high-quality data in one place: www.governancedata.org.

This work stream promotes improved accessibility, standardization, and use of existing governance data.
Collecting and analyzing governance data user habits and trends to better understand and meet the needs of those users in future data production efforts.

This work stream involves an analysis of responses collected through the 2014 Reform Efforts Survey as well as the collection of new data through novel “snap polls” focused on understanding future demand for governance data.
Piloting coordinated data co-production efforts to explore possible economies of scale.

This work stream aims to improve the availability of data, particularly for under-assessed countries, and to drive down the costs of data production over time….(More)

A machine intelligence commission for the UK

Curated on March 1, 2016August 3, 2018 by Stefaan Verhulst

Geoff Mulgan at NESTA: ” This paper makes the case for creating a Machine Intelligence Commission – a new public institution to help the development of new generations of algorithms, machine learning tools and uses of big data, ensuring that the public interest is protected.

I argue that new institutions of this kind – which can interrogate, inspect and influence technological development – are a precondition for growing informed public trust. That trust will, in turn, be essential if we are to reap the full potential public and economic benefits from new technologies. The proposal draws on lessons from fields such as human fertilisation, biotech and energy, which have shown how trust can be earned, and how new industries can be grown. It also draws on lessons from the mistakes made in fields like GM crops and personal health data, where lack of trust has impeded progress….(More)”

Meet your Matchmaker: New crowdsourced sites for rare diseases

Curated on March 1, 2016August 3, 2018 by Stefaan Verhulst

Carina Storrs at CNN: “Angela’s son Jacob was born with a number of concerning traits. He had an extra finger, and a foot and hip that were abnormally shaped. The doctors called in geneticists to try to diagnose his unusual condition. “That started our long, 12-year journey,” said Angela, who lives in the Baltimore area.

As geneticists do, they studied Jacob’s genes, looking for mutations in specific regions of the genome that could point to a problem. But there were no leads.

In the meantime, Jacob developed just about every kind of health problem there is. He has cognitive delays, digestive problems, muscle weakness, osteoporosis and other ailments.

“It was extremely frustrating, it was like being on a roller coaster. You wait six to eight weeks for the (gene) test and then it comes back as showing nothing,” recalled Angela, who asked that their last name not be used to protect her son’s privacy. “How do we go about treating until we get at what it is?”

Finally a test last year, which was able to take a broad look at all of Jacob’s genes, revealed a possible genetic culprit, but it still did not shed any light on his condition. “Nothing was known about the gene,” said Dr. Antonie Kline, director of pediatric genetics at the Greater Baltimore Medical Center, who had been following Jacob since birth.

Fortunately, Kline knew about an online program called GeneMatcher, which launched in December 2013. It would allow her to enter the new mystery gene into a database and search for other clinicians in the world who work with patients who have mutations in the same gene….

the search for “someone else on the planet” can be hard, Hamosh said. The diseases in GeneMatcher are rare, affecting fewer than 200,000 people in the United States, and it can be difficult for clinicians with similar patients to find each other just through word of mouth and professional connections. Au, the Canadian researcher with a patient similar to Jacob, is actually a friend of Kline’s, but the two had never realized their patients’ similarities.

It was not just Hamosh and her colleagues who were struck by the need for something like GeneMatcher. At the same time they were developing their program, researchers in Canada and the UK were creating PhenomeCentral and Decipher, respectively.

The three are collectively known as matchmaker programs. They connect patients with rare diseases which clinicians may never have seen before. In the case of PhenomeCentral, however, clinicians do not have to have a genetic culprit and can search only for other patients with similar traits or symptoms.

In the summer of 2015, it got much easier for clinicians all over the world to use these programs, when a clearinghouse site called Matchmaker Exchange was launched. They can now enter the patient information one time and search all three databases….(More)

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