Washington Post: “The White House launched the We The People petition site in 2011 as a way for Americans to get their government to respond to their calls for action. On the digital platform, people can create and sign petitions seeking specific action on an issue from the federal government. In theory, once a petition has garnered a certain number of signatures within a certain time frame, it is reviewed by White House staff and receives an official response.
But that’s not always what happens.
Now a new site, www.whpetitions.info, takes its own tally and highlights petitions that have received enough signatures but have not received responses. By its count, the White House has responded to 87 percent of petitions that have met their signature thresholds with an average response time of 61 days. But the average waiting time so far for the 30 unanswered petitions is 240 days. And six of them have been waiting for over a year.”
Behold: A Digital Bill of Rights for the Internet, by the Internet
Mashable: “The digital rights conversation was thrust into the mainstream spotlight after news of ongoing, widespread mass surveillance programs leaked to the public. Always a hot topic, these revelations sparked a strong online debate among the Internet community.
It also made us here at Mashable reflect on the digital freedoms and protections we feel each user should be guaranteed as a citizen of the Internet. To highlight some of the great conversations taking place about digital rights online, we asked the digital community to collaborate with us on the creation of a crowdsourced Digital Bill of Rights.
After six weeks of public discussions, document updates and changes, as well as incorporating input from digital rights experts, Mashable is pleased to unveil its first-ever Digital Bill of Rights, made for the Internet, by the Internet.”
A Videogame That Recruits Players to Map the Brain
Wired: “I’m no neuroscientist, and yet, here I am at my computer attempting to reconstruct a neural circuit of a mouse’s retina. It’s not quite as difficult and definitely not as boring as it sounds. In fact, it’s actually pretty fun, which is a good thing considering I’m playing a videogame.
Called EyeWire, the browser-based game asks players to map the connections between retinal neurons by coloring in 3-D slices of the brain. Much like any other game out there, being good at EyeWire earns you points, but the difference is that the data you produce during gameplay doesn’t just get you on a leader board—it’s actually used by scientists to build a better picture of the human brain.
Created by neuroscientist Sebastian Seung’s lab at MIT, EyeWire basically gamifies the professional research Seung and his collaborators do on a daily basis. Seung is studying the connectome, the hyper-complex tangle of connections among neurons in the brain.”
Big data, crowdsourcing and machine learning tackle Parkinson’s
Successful Workingplace: “Parkinson’s is a very tough disease to fight. People suffering from the disease often have significant tremors that keep them from being able to create accurate records of their daily challenges. Without this information, doctors are unable to fine tune drug dosages and other treatment regimens that can significantly improve the lives of sufferers.
It was a perfect catch-22 situation until recently, when the Michael J. Fox Foundation announced that LIONsolver, a company specializing in machine learning software, was able to differentiate Parkinson’s patients from healthy individuals and to also show the trend in symptoms of the disease over time.…
To set up the competition, the Foundation worked with Kaggle, an organization that specializes in crowdsourced big data analysis competitions. The use of crowdsourcing as a way to get to the heart of very difficult Big Data problems works by allowing people the world over from a myriad of backgrounds and with diverse experiences to devote time on personally chosen challenges where they can bring the most value. It’s a genius idea for bringing some of the scarcest resources together with the most intractable problems.”
Can We Build A Kickstarter For Cancer?
Paul Howard in Forbes: “tarting you own band, writing your first novel, or re-publishing your favorite ‘80s tabletop RPG are all cool goals. You can do them all on Kickstarter. What would be cooler?
How about funding a virtual biotech company with one goal: Saving or extending the life of a cancer patient who doesn’t respond to “standard of care” treatments….
The Cancer Commons approach – a distributed framework for empowering patients and learning from every patient/treatment combination – breaks down traditional distinctions between clinical trials and patient treatment in the “real world.” Instead of developing treatments in a lab and then testing them on randomized patients in clinical trials (designed to benefit future patients), researchers would apply the latest scientific knowledge and tools to help each patient achieve the best possible outcome today based on what we know – or think we can predict – about a molecular subtype of cancer….
We’ll need more than money to power a Kickstarter-for-cancer movement. We’ll need to encourage companies – from Big Pharma to “small” biotechs – to participate in distributed, Bayesian trials where new biomarkers or combinations of biomarkers are tested in patients with particular molecular profiles. And the FDA is going to have to be convinced that the system is going to generate high quality data that benefits patients, not sell them snake-oil cures.
In return for companies making their compound libraries and experimental drugs available for the “virtual biotechs” launched by cancer patients and their families, there should be a regulatory path established to take the most promising drugs and drug combinations to market.”
Sitegeist
“Sitegeist is a mobile application that helps you to learn more about your surroundings in seconds. Drawing on publicly available information, the app presents solid data in a simple at-a-glance format to help you tap into the pulse of your location. From demographics about people and housing to the latest popular spots or weather, Sitegeist presents localized information visually so you can get back to enjoying the neighborhood. The application draws on free APIs such as the U.S. Census, Yelp! and others to showcase what’s possible with access to data. Sitegeist was created by the Sunlight Foundation in consultation with design firm IDEO and with support from the John S. and James L. Knight Foundation. It is the third in a series of National Data Apps.”
Copyright Done Right? Finland To Vote On Crowdsourced Regulations
Fast-Feed: “Talk about crowdsourcing: Finland is set to vote on a set of copyright laws that weren’t proposed by government or content-making agencies: They were drafted by citizens.
Finns are able to propose laws that the government must consider if 50,000 supporters sign a petition calling for the law within six months. A set of copyright regulations that are fairer to everyone just passed that threshold, and TorrentFreak.com reports that a government vote is likely in early 2014. The new laws were created with the help of the Finnish Electronic Frontier Foundation, and the body has promised that it will maintain pressure on the political system so that the law will actually be changed.
The proposed new laws would decriminalize file sharing and prevent house searches and surveillance of pirates. TorrentFreak reminds us of the international media outcry that happened last year when during a police raid a 9-year-old girl’s laptop was confiscated on the grounds that she stole copyrighted content. Finland’s existing copyright laws, under what’s called the Lex Karpela amendment, are very strict and criminalize the breaking of DRM for copying purposes as well as preventing discussion of the technology for doing so. The laws have been criticized by activists and observers for their strictness and infringement upon freedom of speech.”
‘Medical Instagram’ helps build a library of reference photos for doctors
Springwise: “The power of the visual sharing that makes platforms such as Instagram so popular has been harnessed by retailers like Ask CT Food to share knowledge about cooking, but could the same be done for the medical world? Figure1 enables health professionals to upload and share photos of conditions, creating online discussion as well as crowdsourcing a database of reference images.
Developed by healthcare tech startup Movable Science, the platform is designed in a similar vein to Instagram and enables medical professionals to create their own feed of images from the cases they deal with. In order to protect patients’ identities, the app uses facial recognition to block out faces, while users can add their own marks to cover up other indentifiable marks. They can also add pointers and annotations, as well as choosing who sees it, before uploading the image. Photos can be tagged with relevant terms to allow the community to easily find them through search and others can comment on the images, fostering discussion among users. Images can also be starred, which acts simultaneously as an indication of quality as well as enabling users to save useful images for later reference. …
Although Instagram was developed with the broad purpose of entertainment and social sharing, Figure1 has tweaked the platform’s functions to provide a tool that could help doctors and students share their knowledge and learn from others in an engaging way…”
Crowdsourcing—Harnessing the Masses to Advance Health and Medicine
A Systematic Review of the literature in the Journal of General Internal Medicine: “Crowdsourcing research allows investigators to engage thousands of people to provide either data or data analysis. However, prior work has not documented the use of crowdsourcing in health and medical research. We sought to systematically review the literature to describe the scope of crowdsourcing in health research and to create a taxonomy to characterize past uses of this methodology for health and medical research..
Twenty-one health-related studies utilizing crowdsourcing met eligibility criteria. Four distinct types of crowdsourcing tasks were identified: problem solving, data processing, surveillance/monitoring, and surveying. …
Utilizing crowdsourcing can improve the quality, cost, and speed of a research project while engaging large segments of the public and creating novel science. Standardized guidelines are needed on crowdsourcing metrics that should be collected and reported to provide clarity and comparability in methods.”
Participatory Democracy in the New Millenium
New literature review in Contemporary Sociology by Francesca Polletta: “By the 1980s, experiments in participatory democracy seemed to have been relegated by scholars to the category of quixotic exercises in idealism, undertaken by committed (and often aging) activists who were unconcerned with political effectiveness or economic efficiency. Today, bottom-up decision making seems all the rage. Crowdsourcing and Open Source, flat management in business, horizontalism in protest politics, collaborative governance in policymaking—these are the buzzwords now and they are all about the virtues of nonhierarchical and participatory decision making.
What accounts for this new enthusiasm for radical democracy? Is it warranted? Are champions of this form understanding key terms like equality and consensus differently than did radical democrats in the 1960s and 70s? And is there any reason to believe that today’s radical democrats are better equipped than their forebears to avoid the old dangers of endless meetings and rule by friendship cliques? In this admittedly selective review, I will take up recent books on participatory democracy in social movements, non- and for-profit organizations, local governments, and electoral campaigning. These are perhaps not the most influential books on participatory democracy since 2000—after all, most of them are brand new—but they speak interestingly to the state of participatory democracy today. Taken together, they suggest that, on one hand, innovations in technology and in activism have made democratic decision making both easier and fairer. On the other hand, the popularity of radical democracy may be diluting its force. If radical democracy comes to mean simply public participation, then spectacles of participation may be made to stand in for mechanisms of democratic accountability.”