Using Tweets and Posts to Speed Up Organ Donation

Curated on Posted on by Stefaan Verhulst

David Bornstein in the New York Times: “…But there is a problem: Demand for organ transplants vastly outstrips supply, as my colleague Tina Rosenberg has reported. In 2015 in the United States, there were only about 9,000 deceased donors (each of whom can save up to eight lives) and 6,000 living donors (who most often donate a kidney or liver lobe). Today, more than 121,000 people are on waiting lists, roughly 100,000 for kidney transplants, 15,000 for livers, and 4,000 for hearts. And the lists keep getting longer — 3,000 people are added to the kidney list each month. Last year, more than 4,000 people died while waiting for a new kidney; 3,600 dropped off the waiting list because they became too sick to qualify for a transplant.

Although 95 percent of Americans support organ donation, fewer than half of American adults are registered as donors. Research suggests that the number who donate organs after death could be increased greatly. Moreover, surveys indicate untapped support for living donation, too; nearly one in four people have told pollsters they would be willing to donate a kidney to save the life of a friend, community member or stranger. “If one in 10,000 Americans decided to donate each year, there wouldn’t be a shortage,” said Josh Morrison, who donated a kidney to a stranger and founded WaitList Zero, an organization that works to increase living kidney donation.

What could be done to harness people’s generous impulses more effectively to save lives?

One group attacking the question is Organize, which was founded in 2014 by Rick Segal’s son Greg, and Jenna Arnold, a media producer and educator who has worked with MTV and the United Nations in engaging audiences in social issues. Organize uses technology, open data and insights from behavioral economics to simplify becoming an organ donor.

This approach is shaking up longstanding assumptions.

For example, in the last four decades, people have most often been asked to register as an organ donor as part of renewing or obtaining a driver’s license. This made sense in the 1970s, when the nation’s organ procurement system was being set up, says Blair Sadler, the former president and chief executive of Rady Children’s Hospital in San Diego. He helped draft theUniform Anatomical Gift Act in 1967, which established a national legal framework for organ donation. “Health care leaders were asking, ‘How do we make this more routine?’” he recalled. “It’s hard to get people to put it in their wills. Oh, there’s a place where people have to go every five years” — their state Department of Motor Vehicles.

Today, governments allow individuals to initiate registrations online, but the process can be cumbersome. For example, New York State required me to fill out a digital form on my computer, then print it out and mail it to Albany. Donate Life America, by contrast, allows individuals to register online as an organ donor just by logging in with email or a Facebook or Google account — much easier.

In practice, legal registration may be overemphasized. It may be just as important to simply make your wishes known to your loved ones. When people tell relatives, “If something happens to me, I want to be an organ donor,” families almost always respect their wishes. This is particularly important for minors, who cannot legally register as donors.

Using that insight, Organize is making it easier to conduct social media campaigns to both prompt and collect sentiments about organ donation from Facebook, Twitter and Instagram.

If you post or tweet about organ donation, or include a hashtag like #iwanttobeanorgandonor, #organdonor, #donatemyparts, or any of a number of other relevant terms, Organize captures the information and logs it in a registry. In a year, it has gathered the names of nearly 600,000 people who declare support for organ donation. Now the big question is: Will it actually increase organ donation rates?

We should begin getting an idea pretty soon. Organize has been working with the Nevada Donor Network to test its registry. And in the coming months, several other states will begin using it….(More)”

The promises and pitfalls of open urban data

Curated on Posted on by Stefaan Verhulst

Keynote by Robert M. Goerge at the 2016 Third International Conference on eDemocracy & eGovernment (ICEDEG) Open data portals are springing up around the world. Municipalities, states and countries have made available data that has never been as accessible to the general public. These data have led to many applications that have informed the public of new urban conditions or provided information to make urban life easier. However, it should be clear that these data have limitations in the effort to solve many urban problems because in may cases they do not provide all of the information that is needed by government and NGOs to get at the cause or at least correlations of the problem at hand. It is still necessary to have access to data that cannot be made public to address some of most serious urban problems. While this seems just to apply to public access, it is also the case that government employees or those with legitimate access to the necessary non-open data lack access because of legal, organizational, privacy, or bureaucratic issues. This limits the promise of increasing data-driven efforts to address the most critical urban issues. Solutions to these problems in the context of ethical behavior will be discussed….(More)”

What’s Wrong with Open-Data Sites–and How We Can Fix Them

Curated on Posted on by Stefaan Verhulst

César A. Hidalgo at Scientific American: “Imagine shopping in a supermarket where every item is stored in boxes that look exactly the same. Some are filled with cereal, others with apples, and others with shampoo. Shopping would be an absolute nightmare! The design of most open data sites—the (usually government) sites that distribute census, economic and other data to be used and redistributed freely—is not exactly equivalent to this nightmarish supermarket. But it’s pretty close.

During the last decade, such sites—data.gov, data.gov.uk, data.gob.cl,data.gouv.fr, and many others—have been created throughout the world. Most of them, however, still deliver data as sets of links to tables, or links to other sites that are also hard to comprehend. In the best cases, data is delivered through APIs, or application program interfaces, which are simple data query languages that require a user to have a basic knowledge of programming. So understanding what is inside each dataset requires downloading, opening, and exploring the set in ways that are extremely taxing for users. The analogy of the nightmarish supermarket is not that far off.

THE U.S. GOVERNMENT’S OPEN DATA SITE

The consensus among those who have participated in the creation of open data sites is that current efforts have failed and we need new options. Pointing your browser to these sites should show you why. Most open data sites are badly designed, and here I am not talking about their aesthetics—which are also subpar—but about the conceptual model used to organize and deliver data to users. The design of most open data sites follows a throwing-spaghetti-against-the-wall strategy, where opening more data, instead of opening data better, has been the driving force.

Some of the design flaws of current open data sites are pretty obvious. The datasets that are more important, or could potentially be more useful, are not brought into the surface of these sites or are properly organized. In our supermarket analogy, not only all boxes look the same, but also they are sorted in the order they came. This cannot be the best we can do.

There are other design problems that are important, even though they are less obvious. The first one is that most sites deliver data in the way in which it is collected, instead of used. People are often looking for data about a particular place, occupation, industry, or about an indicator (such as income, or population). If the data they need comes from the national survey of X, or the bureau of Y, it is secondary and often—although not always—irrelevant to the user. Yet, even though this is not the way we should be giving data back to users, this is often what open data sites do.

The second non-obvious design problem, which is probably the most important, is that most open data sites bury data in what is known as the deep web. The deep web is the fraction of the Internet that is not accessible to search engines, or that cannot be indexed properly. The surface of the web is made of text, pictures, and video, which search engines know how to index. But search engines are not good at knowing that the number that you are searching for is hidden in row 17,354 of a comma separated file that is inside a zip file linked in a poorly described page of an open data site. In some cases, pressing a radio button and selecting options from a number of dropdown menus can get you the desired number, but this does not help search engines either, because crawlers cannot explore dropdown menus. To make open data really open, we need to make it searchable, and for that we need to bring data to the surface of the web.

So how do we that? The solution may not be simple, but it starts by taking design seriously. This is something that I’ve been doing for more than half a decade when creating data visualization engines at MIT. The latest iteration of our design principles are now embodied in DataUSA, a site we created in a collaboration between Deloitte, Datawheel, and my group at MIT.

So what is design, and how do we use it to improve open data sites? My definition of design is simple. Design is discovering the forms that best fulfill a function….(More)”

Beyond the Digital Divide: Towards a Situated Approach to Open Data

Curated on Posted on by Stefaan Verhulst
Paper by Bezuidenhout, L, Rappert, B, Kelly, A and Leonelli, S: “Poor provision of information and communication technologies in low/middle-income countries represents a concern for promoting Open Data. This is often framed as a “digital divide” and addressed through initiatives that increase the availability of information and communication technologies to researchers based in low-resourced environments, as well as the amount of resources freely accessible online, including data themselves. Using empirical data from a qualitative study of lab-based research in Africa we highlight the limitations of such framing and emphasize the range of additional factors necessary to effectively utilize data available online. We adopt the ‘Capabilities Approach’ proposed by Sen to highlight the distinction between simply making resources available, and doing so while fostering researchers’ ability to use them. This provides an alternative orientation that highlights the persistence of deep inequalities within the seemingly egalitarian-inspired Open Data landscape. The extent and manner of future data sharing, we propose, will hinge on the ability to respond to the heterogeneity of research environments…(More)“

mySidewalk

Curated on Posted on by Stefaan Verhulst

Springwise: “With vast amounts of data now publicly available, the answers to many questions lie buried in the numbers, and we already saw a publishing platform helping entrepreneurs visualize government data. For an organization as passionate about civic engagement asmySidewalk, this open data is a treasure trove of compelling stories.

mySidewalk was founded by city planners who recognized the potential force for change contained in local communities. Yet without a compelling reason to get involved, many individuals remain ‘interested bystanders’ — something mySidewalk is determined to change.

Using the latest available data, mySidewalk creates dashboards that are customized for every project to help local public officials make the most informed decisions possible. The dashboards present visualizations of a wide range of socioeconomic and demographic datasets, as well as provide local, regional and national comparisons, all of which help to tell the stories behind the numbers.

It is those stories that mySidewalk believes will provide enough motivation for the ‘interested bystanders’ to get involved. As it says on the mySidewalk website, “Share your ideas. Shape your community.” Organizations of all types have taken notice of the power of data, with businesses using geo-tagging to analyze social media content, and real-time information sharing helping humanitarians in crises….(More)”

Supply and demand of open data in Mexico: A diagnostic report on the government’s new open data portal

Curated on Posted on by Stefaan Verhulst

Report by Juan Ortiz Freuler: “Following a promising and already well-established trend, in February 2014 the Office of the President of Mexico launched its open data portal (datos.gob.mx). This diagnostic –carried out between July and September of 2015- is designed to brief international donors and stakeholders such as members of the Open Government Partnership Steering Committee, provides the reader with contextual information to understand the state of supply and demand for open data from the portal, and the specific challenges the mexican government is facing in its quest to implement the policy. The insights offered through data processing and interviews with key stakeholders indicate the need to promote: i) A sense of ownership of datos.gob.mx by the user community, but particularly by the officials in charge of implementing the policy within each government unit; ii) The development of tools and mechanisms to increase the quality of the data provided through the portal; and iii) Civic hacking of the portal to promote innovation, and a sense of appropriation that would increase the policy’s long-term resilience to partisan and leadership change….(More)”

See also Underlying data: http://bit.ly/dataMXEng1; Spanish here: http://bit.ly/DataMxCastell; Underlying data:http://bit.ly/dataMX2

NEW Platform for Sharing Research on Opening Governance: The Open Governance Research Exchange (OGRX)

Curated on Posted on by Stefaan Verhulst

Andrew Young: “Today,  The GovLab, in collaboration with founding partners mySociety and the World Bank’s Digital Engagement Evaluation Team are launching the Open Governance Research Exchange (OGRX), a new platform for sharing research and findings on innovations in governance.

From crowdsourcing to nudges to open data to participatory budgeting, more open and innovative ways to tackle society’s problems and make public institutions more effective are emerging. Yet little is known about what innovations actually work, when, why, for whom and under what conditions.

And anyone seeking existing research is confronted with sources that are widely dispersed across disciplines, often locked behind pay walls, and hard to search because of the absence of established taxonomies. As the demand to confront problems in new ways grows so too does the urgency for making learning about governance innovations more accessible.

As part of GovLab’s broader effort to move from “faith-based interventions” toward more “evidence-based interventions,” OGRX curates and makes accessible the most diverse and up-to-date collection of findings on innovating governance. At launch, the site features over 350 publications spanning a diversity of governance innovation areas, including but not limited to:

Visit ogrx.org to explore the latest research findings, submit your own work for inclusion on the platform, and share knowledge with others interested in using science and technology to improve the way we govern. (More)”

Open Data Supply: Enriching the usability of information

Curated on Posted on by Stefaan Verhulst

Report by Phoensight: “With the emergence of increasing computational power, high cloud storage capacity and big data comes an eager anticipation of one of the biggest IT transformations of our society today.

Open data has an instrumental role to play in our digital revolution by creating unprecedented opportunities for governments and businesses to leverage off previously unavailable information to strengthen their analytics and decision making for new client experiences. Whilst virtually every business recognises the value of data and the importance of the analytics built on it, the ability to realise the potential for maximising revenue and cost savings is not straightforward. The discovery of valuable insights often involves the acquisition of new data and an understanding of it. As we move towards an increasing supply of open data, technological and other entrepreneurs will look to better utilise government information for improved productivity.

This report uses a data-centric approach to examine the usability of information by considering ways in which open data could better facilitate data-driven innovations and further boost our economy. It assesses the state of open data today and suggests ways in which data providers could supply open data to optimise its use. A number of useful measures of information usability such as accessibility, quantity, quality and openness are presented which together contribute to the Open Data Usability Index (ODUI). For the first time, a comprehensive assessment of open data usability has been developed and is expected to be a critical step in taking the open data agenda to the next level.

With over two million government datasets assessed against the open data usability framework and models developed to link entire country’s datasets to key industry sectors, never before has such an extensive analysis been undertaken. Government open data across Australia, Canada, Singapore, the United Kingdom and the United States reveal that most countries have the capacity for improvements in their information usability. It was found that for 2015 the United Kingdom led the way followed by Canada, Singapore, the United States and Australia. The global potential of government open data is expected to reach 20 exabytes by 2020, provided governments are able to release as much data as possible within legislative constraints….(More)”

The Open Data Barometer (3rd edition)

Curated on Posted on by Stefaan Verhulst

The Open Data Barometer: “Once the preserve of academics and statisticians, data has become a development cause embraced by everyone from grassroots activists to the UN Secretary-General. There’s now a clear understanding that we need robust data to drive democracy and development — and a lot of it.

Last year, the world agreed the Sustainable Development Goals (SDGs) — seventeen global commitments that set an ambitious agenda to end poverty, fight inequality and tackle climate change by 2030. Recognising that good data is essential to the success of the SDGs, the Global Partnership for Sustainable Development Data and the International Open Data Charter were launched as the SDGs were unveiled. These alliances mean the “data revolution” now has over 100 champions willing to fight for it. Meanwhile, Africa adopted the African Data Consensus — a roadmap to improving data standards and availability in a region that has notoriously struggled to capture even basic information such as birth registration.

But while much has been made of the need for bigger and better data to power the SDGs, this year’s Barometer follows the lead set by the International Open Data Charter by focusing on how much of this data will be openly available to the public.

Open data is essential to building accountable and effective institutions, and to ensuring public access to information — both goals of SDG 16. It is also essential for meaningful monitoring of progress on all 169 SDG targets. Yet the promise and possibilities offered by opening up data to journalists, human rights defenders, parliamentarians, and citizens at large go far beyond even these….

At a glance, here are this year’s key findings on the state of open data around the world:

    • Open data is entering the mainstream.The majority of the countries in the survey (55%) now have an open data initiative in place and a national data catalogue providing access to datasets available for re-use. Moreover, new open data initiatives are getting underway or are promised for the near future in a number of countries, including Ecuador, Jamaica, St. Lucia, Nepal, Thailand, Botswana, Ethiopia, Nigeria, Rwanda and Uganda. Demand is high: civil society and the tech community are using government data in 93% of countries surveyed, even in countries where that data is not yet fully open.
    • Despite this, there’s been little to no progress on the number of truly open datasets around the world.Even with the rapid spread of open government data plans and policies, too much critical data remains locked in government filing cabinets. For example, only two countries publish acceptable detailed open public spending data. Of all 1,380 government datasets surveyed, almost 90% are still closed — roughly the same as in the last edition of the Open Data Barometer (when only 130 out of 1,290 datasets, or 10%, were open). What is more, much of the approximately 10% of data that meets the open definition is of poor quality, making it difficult for potential data users to access, process and work with it effectively.
    • “Open-washing” is jeopardising progress. Many governments have advertised their open data policies as a way to burnish their democratic and transparent credentials. But open data, while extremely important, is just one component of a responsive and accountable government. Open data initiatives cannot be effective if not supported by a culture of openness where citizens are encouraged to ask questions and engage, and supported by a legal framework. Disturbingly, in this edition we saw a backslide on freedom of information, transparency, accountability, and privacy indicators in some countries. Until all these factors are in place, open data cannot be a true SDG accelerator.
    • Implementation and resourcing are the weakest links.Progress on the Barometer’s implementation and impact indicators has stalled or even gone into reverse in some cases. Open data can result in net savings for the public purse, but getting individual ministries to allocate the budget and staff needed to publish their data is often an uphill battle, and investment in building user capacity (both inside and outside of government) is scarce. Open data is not yet entrenched in law or policy, and the legal frameworks supporting most open data initiatives are weak. This is a symptom of the tendency of governments to view open data as a fad or experiment with little to no long-term strategy behind its implementation. This results in haphazard implementation, weak demand and limited impact.
    • The gap between data haves and have-nots needs urgent attention.Twenty-six of the top 30 countries in the ranking are high-income countries. Half of open datasets in our study are found in just the top 10 OECD countries, while almost none are in African countries. As the UN pointed out last year, such gaps could create “a whole new inequality frontier” if allowed to persist. Open data champions in several developing countries have launched fledgling initiatives, but too often those good open data intentions are not adequately resourced, resulting in weak momentum and limited success.
    • Governments at the top of the Barometer are being challenged by a new generation of open data adopters. Traditional open data stalwarts such as the USA and UK have seen their rate of progress on open data slow, signalling that new political will and momentum may be needed as more difficult elements of open data are tackled. Fortunately, a new generation of open data adopters, including France, Canada, Mexico, Uruguay, South Korea and the Philippines, are starting to challenge the ranking leaders and are adopting a leadership attitude in their respective regions. The International Open Data Charter could be an important vehicle to sustain and increase momentum in challenger countries, while also stimulating renewed energy in traditional open data leaders….(More)”

Emerging urban digital infomediaries and civic hacking in an era of big data and open data initiatives

Curated on Posted on by Stefaan Verhulst

Chapter by Thakuriah, P., Dirks, L., and Keita, Y. in Seeing Cities Through Big Data: Research Methods and Applications in Urban Informatics (forthcoming): “This paper assesses non-traditional urban digital infomediaries who are pushing the agenda of urban Big Data and Open Data. Our analysis identified a mix of private, public, non-profit and informal infomediaries, ranging from very large organizations to independent developers. Using a mixed-methods approach, we identified four major groups of organizations within this dynamic and diverse sector: general-purpose ICT providers, urban information service providers, open and civic data infomediaries, and independent and open source developers. A total of nine organizational types are identified within these four groups. We align these nine organizational types along five dimensions accounts for their mission and major interests, products and services, as well activities they undertake: techno-managerial, scientific, business and commercial, urban engagement, and openness and transparency. We discuss urban ICT entrepreneurs, and the role of informal networks involving independent developers, data scientists and civic hackers in a domain that historically involved professionals in the urban planning and public management domains. Additionally, we examine convergence in the sector by analyzing overlaps in their activities, as determined by a text mining exercise of organizational webpages. We also consider increasing similarities in products and services offered by the infomediaries, while highlighting ideological tensions that might arise given the overall complexity of the sector, and differences in the backgrounds and end-goals of the participants involved. There is much room for creation of knowledge and value networks in the urban data sector and for improved cross-fertilization among bodies of knowledge….(More)”