Curated findings and actionable knowledge at the intersection of technology, innovation, and governance
Reporters Committee for Freedom of the Press: “The Open Government Guide is a complete compendium of information on every state’s open records and open meetings laws. Each state’s section is arranged according to a standard outline, making it easy to compare laws in various states. If you’re a new user of this guide, be sure to read the Introductory Note and User’s Guide.
Please note: These guides cover state laws. We also have a separate Federal Open Government Guide.”
in the New York Times: “Steven Keating’s doctors and medical experts view him as a citizen of the future.
A scan of his brain eight years ago revealed a slight abnormality — nothing to worry about, he was told, but worth monitoring. And monitor he did, reading and studying about brain structure, function and wayward cells, and obtaining a follow-up scan in 2010, which showed no trouble.
But he knew from his research that his abnormality was near the brain’s olfactory center. So when he started smelling whiffs of vinegar last summer, he suspected they might be “smell seizures.”
He pushed doctors to conduct an M.R.I., and three weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball from his brain.
At every stage, Mr. Keating, a 26-year-old doctoral student at the Massachusetts Institute of Technology’s Media Lab, has pushed and prodded to get his medical information, collecting an estimated 70 gigabytes of his own patient data by now. His case points to what medical experts say could be gained if patients had full and easier access to their medical information. Better-informed patients, they say, are more likely to take better care of themselves, comply with prescription drug regimens and even detect early-warning signals of illness, as Mr. Keating did.
“Today he is a big exception, but he is also a glimpse of what people will want: more and more information,” said Dr. David W. Bates, chief innovation officer at Brigham and Women’s Hospital.
Some of the most advanced medical centers are starting to make medical information more available to patients. Brigham and Women’s, where Mr. Keating had his surgery, is part of the Partners HealthCare Group, which now has 500,000 patients with web access to some of the information in their health records including conditions, medications and test results.
Other medical groups are beginning to allow patients online access to the notes taken by physicians about them, in an initiative called OpenNotes. In a yearlong evaluation project at medical groups in three states, more than two-thirds of the patients reported having a better understanding of their health and medical conditions, adopting healthier habits and taking their medications as prescribed more regularly.
The medical groups with OpenNotes programs include Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, Harborview Medical Center in Seattle, the Mayo Clinic, the Cleveland Clinic and the Veterans Affairs department. By now, nearly five million patients in America have been given online access to their notes.
As an articulate young scientist who had studied his condition, Mr. Keating had a big advantage over most patients in obtaining his data. He knew what information to request, spoke the language of medicine and did not need help. The information he collected includes the video of his 10-hour surgery, dozens of medical images, genetic sequencing data and 300 pages of clinical documents. Much of it is on his website, and he has made his medical data available for research….
Opening data to patients raises questions. Will worried patients inundate physicians with time-consuming questions? Will sharing patient data add to legal risks? One detail in the yearlong study of OpenNotes underlines doctors’ concerns; 105 primary physicians completed the study, but 143 declined to participate.
Still, the experience of the doctors in the evaluation seemed reassuring. Only 3 percent said they spent more time answering patient questions outside of visits. Yet knowing that patients could read the notes, one-fifth of the physicians said they changed the way they wrote about certain conditions, like substance abuse and obesity.
Evidence of the benefit to individuals from sharing information rests mainly on a few studies so far. For example, 55 percent of the members of the epilepsy community on PatientsLikeMe, a patient network, reported that sharing information and experiences with others helped them learn about seizures, and 27 percent said it helped them be more adherent to their medications.
Mr. Keating has no doubts. “Data can heal,” he said. “There is a huge healing power to patients understanding and seeing the effects of treatments and medications.”
Health information, by its very nature, is personal. So even when names and other identifiers are stripped off, sharing personal health data more freely with patients, health care providers and researchers raises thorny privacy issues.
Mr. Keating says he is a strong believer in privacy, but he personally believes that the benefits outweigh the risks — and whether to share data or not should be an individual’s choice and an individual responsibility.
Not everyone, surely, would be as comfortable as Mr. Keating is sharing all his medical information. But he says he believes that people will increasingly want access to their medical data and will share it, especially younger people reared on social networks and smartphones.
“This is what the next generation, which lives on data, is going to want,” Mr. Keating said….(More)”
“Davied van Berlo has published a new book about the role of government in the network society. It has not yet been published in English but can be downloaded in Dutch at boek.ambtenaar20.nl.
The Civil Servant 2.0 book is available 
in English.”
About “We, the government”:
“The network society. Everybody’s talking about it, but what does it really mean? What effect does the networking age in society have on government? The public good is no longer just a government issue but a cocreation between government and society. However, what will this collaboration look like and will we be able to execute political goals in such a networked society?
In his third book Davied van Berlo, writer of Civil Servant 2.0 and Civil Servant 2.0 beta, explores the role of government in the network society. “We, the government” gives a new perspective on the working of government and offers civil servants and public officials a hand in shaping their new role in society.”…
Davied has used parts of his new book in the presentation he gave to the Dutch chapter of the Internet Society, see the video. Below the video an english version of the Prezi is available….(More)”
Johnny West at Open Oil: “Open financial models can clearly put analysis into a genuinely independent public space, and also trigger a rise in public understanding which could enrich the governance debate in many countries.
But there is a third function public models can serve: that of advocacy for targeted disclosure of information.
The stress here is on “targeted”. A lot of transparency debates are generic – the need to disclose data as a matter of principle.
It is striking that as the transparency agenda has advanced, and won many battles, so has a debate about whether it is contributing to an increase in accountability. As Paul Collier said: “transparency has to lead to accountability otherwise we’re just ticking loads of boxes”.
We need all these campaigns to continue, and we need to pursue maximum disclosure. Because while transparency does not guarantee accountability, it is its essential prerequisite. Necessary but not sufficient.
But here’s where modeling can help to provide some examples of how data can be used, in a very specific way, to advance accountability.
Let’s take the example of an oil project in Africa. A financial model has to deal with uncertainty and so provides three scenarios for future production and prices, which all have a radical impact on the revenues the government could expect to see. That’s unavoidable. Under the “God, Exxon and everyone else” principle, future price and to some extent production are hard to foresee.
But then there is a second layer of uncertainty caused specifically by the model having to use public domain data. The company, and the government if it exercised its rights of access to information, does not face this second layer because it has access to real data, whereas the public interest model must use estimates and extrapulations. These can be justified, written out and explained – they can be well-informed guesses, in other words, and in the blog on the analytical power of public models, we argue that you can still arrive at useful analysis and conclusions despite this handicap.
Nevertheless, they are guesses. And unlike the first layer of uncertainty, relating to future prices and the ever-changing global market, this second layer can be directly addressed by information the government already has to hand – or could get under its contractual right of access to information….(More)”
Paper by Sandra Braman: “For over two decades, information policy-making for human society has been increasingly supplemented, supplanted, and/or superceded by machinic decision-making; over three decades since legal decision-making has been explicitly put in place to serve machinic rather than social systems; and over four decades since designers of the Internet took the position that they were serving non-human (machinic, or daemon) users in addition to humans. As the “Internet of Things” becomes more and more of a reality, these developments increasingly shape the nature of governance itself. This paper’s discussion of contemporary trends in these diverse modes of human-computer interaction at the system level — interactions between social systems and technological systems — introduces the changing nature of the law as a sociotechnical problem in itself. In such an environment, technological innovations are often also legal innovations, and legal developments require socio-technical analysis as well as social, legal, political, and cultural approaches.
Examples of areas in which sensors are already receiving legal attention are rife. A non-comprehensive listing includes privacy concerns beginning but not ending with those raised by sensors embedded in phones and geolocation devices, which are the most widely discussed and those of which the public is most aware. Sensor issues arise in environmental law, health law, marine law, intellectual property law, and as they are raised by new technologies in use for national security purposes that include those confidence- and security-building measures intended for peacekeeping. They are raised by liability issues for objects that range from cars to ovens. And sensor issues are at the core of concerns about “telemetric policing,” as that is coming into use not only in North America and Europe, but in societies such as that of Brazil as well.
Sensors are involved in every stage of legal processes, from identification of persons of interest to determination of judgments and consequences of judgments. Their use significantly alters the historically-developed distinction among types of decision-making meant to come into use at different stages of the process, raising new questions about when, and how, human decision-making needs to dominate and when, and how, technological innovation might need to be shaped by the needs of social rather than human systems.
This paper will focus on the legal dimensions of sensors used in ubiquitous embedded computing….(More)”
at Radar: “It was big news recently that former Twitter executive Jason Goldman is joining the White House to head up a new office of Digital Strategy.
In his post, Jason asked for advice, posted anywhere, using the hashtag #socialcivics. I decided to do a writeup, as he asked, to share my ideas and to spark further conversation.
Briefly, Jason’s mission, on behalf of the White House, is to create new tools and processes for civic engagement, so that all of us are working more effectively together to build a nation that works for everyone, not just for the few with privileged access.
One of the key ideas I have to offer is something that years ago, in the context of open source software, I called “the architecture of participation.” I wrote:
[Open source software projects] that have built large development communities have done so because they have a modular architecture that allows easy participation by independent or loosely coordinated developers … The Web, however, took the idea of participation to a new level because it opened that participation not just to software developers, but to all users of the system.
Modularity depends on standards — formal or informal expectations about behavior and interfaces — and interoperability. To take an example that is not from software, consider that our most competitive, participatory industries all feature devices made from standardized parts. Whether you’re talking automobiles or personal computers or cell phones, a rich ecosystem of suppliers is possible only because we agreed that the threads on bolts and nuts should be a certain size, that electronic parts should be interchangeable, and that complex, custom assemblies should be kept to a minimum. Even large systems depend on small modular parts, but the fewer modular parts a system has, the more expensive it is, and generally, it can be modified and improved by far fewer people….(More)”
Paper by Henrik Serup Christensen, Maija Karjalainen and Laura Nurminen: “Crowdsourcing legislation gives ordinary citizens, rather than political and bureaucratic elites, the chance to cooperate to come up with innovative new policies. By increasing popular involvement, representative democracies hope to restock dwindling reserves of political legitimacy. However, it is still not clear how involvement in legislative decision making affects the attitudes of the participants. It is therefore of central concern to establish whether crowdsourcing can actually help restore political legitimacy by creating more positive attitudes toward the political system. This article contributes to this research agenda by examining the developments in attitudes among the users on the Finnish website Avoin Ministeriö (“Open Ministry”) which orchestrates crowdsourcing of legislation by providing online tools for deliberating ideas for citizens’ initiatives. The developments in attitudes are investigated with a two-stage survey of 421 respondents who answered questions concerning political and social attitudes, as well as political activities performed. The results suggest that while crowdsourcing legislation has so far not affected political legitimacy in a positive manner, it has the potential to do so….(More)”
| Eric Berlow and Sean Gourley: Mapping ideas worth spreading The event: TED2013 What they’re illustrating: Ecologist Eric Berlow and data scientist Sean Gourley met at TED and discovered that their talks — on the data and ecology of war — were connected. They decided to map a wide variety of interlocking ideas, using TEDx talks as their data set. Most eye-popping moment: At 2:57, talks (represented as nodes) spin and cluster into a multicolored 3D visual map of the TEDx universe. |
| Nathalie Miebach: Art made of storms The event: TEDGlobal 2011 What she’s illustrating: Using strings and beads, Nathalie Miebach translates weather data into woven sculptures — and then uses the sculptures as a basis for musical scores. Most eye-popping moment: Check out the detailed close-ups starting at 3:32, but don’t miss the brief string quartet rendition of her score in the opening shot. |
| Aaron Koblin: Visualizing ourselves … with crowd-sourced data The event: TED2011 What he’s illustrating: Artist Aaron Koblin starts simply enough, with elegant, illuminated maps showing U.S. flight path patterns. But his crowdsourced illustration projects quickly lead us into strange and uncharted visual territory. Most eye-popping moment: At 13:08, Koblin plays a clip from his music video for a posthumous Johnny Cash track, using thousands of web-sourced, frame-by-frame Flash drawings to build a hypnotic and moving portrait of the country legend. |
| David McCandless: The beauty of data visualization The event: TEDGlobal 2010 What he’s illustrating: The glut of information in our world clouds our understanding of current events. Data expert David McCandless shows how infographics help us make sense out of statistics. Most eye-popping moment: At 2:07, McCandless provides a sobering and simple graphic to illustrate the catastrophic impact of the 2008 financial crisis. |
| Carter Emmart: A 3D atlas of the universe The event: TED2010 What he’s illustrating: Oh, the entire known universe, circa 2010 Most eye-popping moment: We pan up from the peaks of the Himalayas to the edge of the cosmos in less than 7:00. You’re really going to want to see the whole thing. |
| Margaret Wertheim: The beautiful math of coral The event: TED2009 What she’s illustrating: Using knitting techniques derived from mathematical algorithms found in natural forms, Margaret Wertheim and her collaborators crocheted a jaw-droppingly accurate re-creation of a coral reef. Most eye-popping moment: From 1:19-1:55, we get a slideshow picturing Wertheim’s “corals” in breathtaking detail, revealing both their mathematical structure and their eerie realism. Don’t be surprised when you reach for your snorkel. |
Jessica Weiss at the International Center for Journalists: “An innovative tool developed to help people register to vote in Kenya is proving to be a valuable asset to voters across the African continent.
GotToVote was created in 2012 by two software developers under the guidance of ICFJ’s Knight International Journalism Fellow Justin Arenstein for use during Kenya’s general elections. In just 24 hours, the developers took voter registration information in a government PDF and turned it into a simple website with usable data that helped people locate the nearest voting center where they could register for elections. Kenyan media drove a large audience to the site, which resulted in a major boost in voter registrations.
Since then, GotToVote has helped people register to vote in Malawi and Zimbabwe. Now, it is being adapted for use in national elections in Ghana and Uganda in 2016.
Ugandan civic groups led by The African Freedom of Information Centre are planning to use it to help people register, to verify registrations and for SMS registration drives. They are also proposing new features—including digital applications to help citizens post issues of concern and compare political positions between parties and candidates so voters better understand the choices they are being offered.
In Ghana, GotToVote is helping citizens find their nearest registration center to make sure they are eligible to vote in that country’s 2016 national elections. The tool, which is optimized for mobile devices, makes voter information easily accessible to the public. It explains who is eligible to register for the 2016 general elections and gives a simple overview of the voter registration process. It also tells users what documentation to take with them to register…..
Last year, Malawi’s national government used GotToVote to check whether voters were correctly registered. As a result, more than 20,000 were found to be incorrectly registered, because they were not qualified voters or were registered in the wrong constituency. In 2013, thousands used GotToVote via their mobile and tablet devices to find their polling places in Zimbabwe.
The successful experiment provides a number of lessons about the power and feasibility of open data projects, showing that they don’t require large teams, big budgets or a lot of time to build…(More)“
Carol Coletta at Knight Foundation: “32 civic innovators receive $5 million in funding in first Knight Cities Challenge…
Several themes emerged among the winning applications, which all sought to accelerate talent, opportunity or engagement—the three primary drivers of city success—in some way. “Bringing life back to public and vacant space” was the theme of our largest category of winners, representing almost a third of the group. The second largest category was “changing the stories people tell about their cities” with almost 20 percent. Three more themes each represented 13 percent of the winning ideas: “reimagining the civic commons,” “retaining talent” and “promoting civic engagement.” A full list of the winners appears below…. (More)”