media

Using Tweets and Posts to Speed Up Organ Donation

Curated on May 11, 2016May 29, 2019 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)”

Regulatory Transformations: An Introduction

Curated on May 11, 2016August 3, 2018 by Stefaan Verhulst

Chapter by Bettina Lange and Fiona Haines in the book Regulatory Transformations: “Regulation is no longer the prerogative of either states or markets. Increasingly citizens in association with businesses catalyse regulation which marks the rise of a social sphere in regulation. Around the world, in San Francisco, Melbourne, Munich and Mexico City, citizens have sought to transform how and to what end economic transactions are conducted. For instance, ‘carrot mob’ initiatives use positive economic incentives, not provided by a state legal system, but by a collective of civil society actors in order to change business behaviour. In contrast to ‘negative’ consumer boycotts, ‘carrotmob’ events use ‘buycotts’. They harness competition between businesses as the lever for changing how and for what purpose business transactions are conducted. Through new social media ‘carrotmobs’ mobilize groups of citizens to purchase goods at a particular time in a specific shop. The business that promises to spend the greatest percentage of its takings on, for instance, environmental improvements, such as switching to a supplier of renewable energy, will be selected for an organized shopping spree and financially benefit from the extra income it receives from the ‘carrot mob’ event.’Carrot mob’ campaigns chime with other fundamental challenges to conventional economic activity, such as the shared use of consumer goods through citizens collective consumption which questions traditional conceptions of private property….(More; Other Chapters)”

Global governance and ICTs: exploring online governance networks around gender and media

Curated on May 10, 2016August 3, 2018 by Stefaan Verhulst

Claudia Padovani and Elena Pavan in the journal “Global Networks“: In this article, we address transformations in global governance brought about by information and communication technologies (ICTs). Focusing on the specific domain of ‘gender-oriented communication governance’, we investigate online interactions among different kinds of actors active in promoting gender equity in and through the media. By tracing and analysing online issue networks, we investigate which actors are capable of influencing the framing of issues and of structuring discursive practices. From the analysis, different forms of power emerge, reflecting diverse modes of engaging in online interactions, where actors can operate as network ‘programmers’, ‘mobilizers’, or ‘switchers’. Our case study suggests that, often, old ways of conceiving actors’ interactions accompany the implementation of new communication tools, while the availability of a pervasive networked infrastructure does not automatically translate into meaningful interactions among all relevant actors in a specific domain….(More)”

Four Steps to Enhanced Crowdsourcing

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

Kendra L. Smith and Lindsey Collins at Planetizen: “Over the past decade, crowdsourcing has grown to significance through crowdfunding, crowd collaboration, crowd voting, and crowd labor. The idea behind crowdsourcing is simple: decentralize decision-making by utilizing large groups of people to assist with solving problems, generating ideas, funding, generating data, and making decisions. We have seen crowdsourcing used in both the private and public sectors. In a previous article, “Empowered Design, By ‘the Crowd,'” we discuss the significant role crowdsourcing can play in urban planning through citizen engagement.

Crowdsourcing in the public sector represents a more inclusive form of governance that incorporates a multi-stakeholder approach; it goes beyond regular forms of community engagement and allows citizens to participate in decision-making. When citizens help inform decision-making, new opportunities are created for cities—opportunities that are beginning to unfold for planners. However, despite its obvious utility, planners underutilize crowdsourcing. A key reason for its underuse can be attributed to a lack of credibility and accountability in crowdsourcing endeavors.

Crowdsourcing credibility speaks to the capacity to trust a source and discern whether information is, indeed, true. While it can be difficult to know if any information is definitively true, indicators of fact or truth include where information was collected, how information was collected, and how rigorously it was fact-checking or peer reviewed. However, in the digital universe of today, individuals can make a habit of posting inaccurate, salacious, malicious, and flat-out false information. The realities of contemporary media make it more difficult to trust crowdsourced information for decision-making, especially for the public sector, where the use of inaccurate information can impact the lives of many and the trajectory of a city. As a result, there is a need to establish accountability measures to enhance crowdsourcing in urban planning.

Establishing Accountability Measures

For urban planners considering crowdsourcing, establishing a system of accountability measures might seem like more effort than it is worth. However, that is simply not true. Recent evidence has proven traditional community engagement (e.g., town halls, forums, city council meetings) is lower than ever. Current engagement also tends to focus on problems in the community rather than the development of the community. Crowdsourcing offers new opportunities for ongoing and sustainable engagement with the community. It can be simple as well.

The following four methods can be used separately or together (we hope they are used together) to help establish accountability and credibility in the crowdsourcing process:

Agenda setting
Growing a crowdsourcing community
Facilitators/subject matter experts (SME)
Microtasking

In addition to boosting credibility, building a framework of accountability measures can help planners and crowdsourcing communities clearly define their work, engage the community, sustain community engagement, acquire help with tasks, obtain diverse opinions, and become more inclusive….(More)”

Ethical Reasoning in Big Data

Curated on April 28, 2016August 3, 2018 by Stefaan Verhulst

Book edited by Collmann, Jeff, and Matei, Sorin Adam: “This book springs from a multidisciplinary, multi-organizational, and multi-sector conversation about the privacy and ethical implications of research in human affairs using big data. The need to cultivate and enlist the public’s trust in the abilities of particular scientists and scientific institutions constitutes one of this book’s major themes. The advent of the Internet, the mass digitization of research information, and social media brought about, among many other things, the ability to harvest – sometimes implicitly – a wealth of human genomic, biological, behavioral, economic, political, and social data for the purposes of scientific research as well as commerce, government affairs, and social interaction. What type of ethical dilemmas did such changes generate? How should scientists collect, manipulate, and disseminate this information? The effects of this revolution and its ethical implications are wide-ranging.

This book includes the opinions of myriad investigators, practitioners, and stakeholders in big data on human beings who also routinely reflect on the privacy and ethical issues of this phenomenon. Dedicated to the practice of ethical reasoning and reflection in action, the book offers a range of observations, lessons learned, reasoning tools, and suggestions for institutional practice to promote responsible big data research on human affairs. It caters to a broad audience of educators, researchers, and practitioners. Educators can use the volume in courses related to big data handling and processing. Researchers can use it for designing new methods of collecting, processing, and disseminating big data, whether in raw form or as analysis results. Lastly, practitioners can use it to steer future tools or procedures for handling big data. As this topic represents an area of great interest that still remains largely undeveloped, this book is sure to attract significant interest by filling an obvious gap in currently available literature. …(More)”

Mexico City is crowdsourcing its new constitution using Change.org in a democracy experiment

Curated on April 25, 2016November 14, 2018 by Stefaan Verhulst

Ana Campoy at Quartz: “Mexico City just launched a massive experiment in digital democracy. It is asking its nearly 9 million residents to help draft a new constitution through social media. The crowdsourcing exercise is unprecedented in Mexico—and pretty much everywhere else.

as locals are known, can petition for issues to be included in the constitution through Change.org (link inSpanish), and make their case in person if they gather more than 10,000 signatures. They can also annotate proposals by the constitution drafters via PubPub, an editing platform (Spanish) similar to GoogleDocs.

The idea, in the words of the mayor, Miguel Angel Mancera, is to“bestow the constitution project (Spanish) with a democratic,progressive, inclusive, civic and plural character.”

There’s a big catch, however. The constitutional assembly—the body that has the final word on the new city’s basic law—is under no obligation to consider any of the citizen input. And then there are the practical difficulties of collecting and summarizing the myriad of views dispersed throughout one of the world’s largest cities.

That makes Mexico City’s public-consultation experiment a big test for the people’s digital power, one being watched around the world.Fittingly, the idea of crowdsourcing a constitution came about in response to an attempt to limit people power.

Fittingly, the idea of crowdsourcing a constitution came about in response to an attempt to limit people power.
For decades, city officials had fought to get out from under the thumb of the federal government, which had the final word on decisions such as who should be the city’s chief of police. This year, finally, they won a legal change that turns the Distrito Federal (federal district), similar to the US’s District of Columbia, into Ciudad de México (Mexico City), a more autonomous entity, more akin to a state. (Confusingly, it’s just part of the larger urban area also colloquially known as Mexico City, which spills into neighboring states.)

However, trying to retain some control, the Mexican congress decided that only 60% of the delegates to the city’s constitutional assembly would be elected by popular vote. The rest will be assigned by the president, congress, and Mancera, the mayor. Mancera is also the only one who can submit a draft constitution to the assembly.

Mancera’s response was to create a committee of some 30 citizens(Spanish), including politicians, human-rights advocates, journalists,and even a Paralympic gold medalist, to write his draft. He also calledfor the development of mechanisms to gather citizens’ “aspirations,values, and longing for freedom and justice” so they can beincorporated into the final document.

The mechanisms, embedded in an online platform (Spanish) that offersvarious ways to weigh in, were launched at the end of March and willcollect inputs until September 1. The drafting group has until themiddle of that month to file its text with the assembly, which has toapprove the new constitution by the end of January.

An experiment with few precedents

Mexico City didn’t have a lot of examples to draw on, since not a lot ofplaces have experience with crowdsourcing laws. In the US, a few locallawmakers have used Wiki pages and GitHub to draft bills, says MarilynBautista, a lecturer at Stanford Law School who has researched thepractice. Iceland—with a population some 27 times smaller than MexicoCity’s—famously had its citizens contribute to its constitution withinput from social media. The effort failed after the new constitution gotstuck in parliament.

In Mexico City, where many citizens already feel left out, the first bighurdle is to convince them it’s worth participating….

Then comes the task of making sense of the cacophony that will likelyemerge. Some of the input can be very easily organized—the results ofthe survey, for example, are being graphed in real time. But there could be thousands of documents and comments on the Change.org petitionsand the editing platform.

Ideas are grouped into 18 topics, such as direct democracy,transparency and economic rights. They are prioritized based on theamount of support they’ve garnered and how relevant they are, saidBernardo Rivera, an adviser for the city. Drafters get a weekly deliveryof summarized citizen petitions….

An essay about human rights on the PubPub platform.(PubPub)

The most elaborate part of the system is PubPub, an open publishing platform similar to Google Docs, which is based on a project originally developed by MIT’s Media Lab. The drafters are supposed to post essays on how to address constitutional issues, and potentially, the constitution draft itself, once there is one. Only they—or whoever they authorize—will be able to reword the original document.

User comments and edits are recorded on a side panel, with links to the portion of text they refer to. Another screen records every change, so everyone can track which suggestions have made it into the text. Members of the public can also vote comments up or down, or post their own essays….(More).