Make Data Sharing Routine to Prepare for Public Health Emergencies


Jean-Paul Chretien, Caitlin M. Rivers, and Michael A. Johansson in PLOS Medicine: “In February 2016, Wellcome Trust organized a pledge among leading scientific organizations and health agencies encouraging researchers to release data relevant to the Zika outbreak as rapidly and widely as possible [1]. This initiative echoed a September 2015 World Health Organization (WHO) consultation that assessed data sharing during the recent West Africa Ebola outbreak and called on researchers to make data publicly available during public health emergencies [2]. These statements were necessary because the traditional way of communicating research results—publication in peer-reviewed journals, often months or years after data collection—is too slow during an emergency.

The acute health threat of outbreaks provides a strong argument for more complete, quick, and broad sharing of research data during emergencies. But the Ebola and Zika outbreaks suggest that data sharing cannot be limited to emergencies without compromising emergency preparedness. To prepare for future outbreaks, the scientific community should expand data sharing for all health research….

Open data deserves recognition and support as a key component of emergency preparedness. Initiatives to facilitate discovery of datasets and track their use [4042]; provide measures of academic contribution, including data sharing that enables secondary analysis [43]; establish common platforms for sharing and integrating research data [44]; and improve data-sharing capacity in resource-limited areas [45] are critical to improving preparedness and response.

Research sponsors, scholarly journals, and collaborative research networks can leverage these new opportunities with enhanced data-sharing requirements for both nonemergency and emergency settings. A proposal to amend the International Health Regulations with clear codes of practice for data sharing warrants serious consideration [46]. Any new requirements should allow scientists to conduct and communicate the results of secondary analyses, broadening the scope of inquiry and catalyzing discovery. Publication embargo periods, such as one under consideration for genetic sequences of pandemic-potential influenza viruses [47], may lower barriers to data sharing but may also slow the timely use of data for public health.

Integrating open science approaches into routine research should make data sharing more effective during emergencies, but this evolution is more than just practice for emergencies. The cause and context of the next outbreak are unknowable; research that seems routine now may be critical tomorrow. Establishing openness as the standard will help build the scientific foundation needed to contain the next outbreak.

Recent epidemics were surprises—Zika and chikungunya sweeping through the Americas; an Ebola pandemic with more than 10,000 deaths; the emergence of severe acute respiratory syndrome and Middle East respiratory syndrome, and an influenza pandemic (influenza A[H1N1]pdm09) originating in Mexico—and we can be sure there are more surprises to come. Opening all research provides the best chance to accelerate discovery and development that will help during the next surprise….(More)”

Achieving Open Justice through Citizen Participation and Transparency


Book edited by Carlos E. Jiménez-Gómez and Mila Gascó-Hernández: “Open government initiatives have become a defining goal for public administrators around the world. However, progress is still necessary outside of the executive and legislative sectors.

Achieving Open Justice through Citizen Participation and Transparency is a pivotal reference source for the latest scholarly research on the implementation of open government within the judiciary field, emphasizing the effectiveness and accountability achieved through these actions. Highlighting the application of open government concepts in a global context, this book is ideally designed for public officials, researchers, professionals, and practitioners interested in the improvement of governance and democracy….(More)

 

Everyday ‘Placebo Buttons’ Create Semblance of Control


crosswalk buttons
Crosswalk buttons by Peter Kazanjy

Each of these seemingly disconnected everyday buttons you pressed may have something in common: it is quite possible that none of them did a thing to influence the world around you. Any perceived impact may simply have been imaginary, a placebo effect giving you the illusion of control.

In the early 2000s, New York City transportation officials finally admitted what many had suspected: the majority of crosswalk buttons in the city are completely disconnected from the traffic light system. Thousands of these initially worked to request a signal change but most no longer do anything, even if their signage suggests otherwise.

Naturally, a number of street art projects have popped up around the humorous futility of pedestrians pressing placebo buttons:

Crosswalk buttons were originally introduced to NYC during the 1960s. At the time, there was less congestion and it made sense to leave green lights on for major thoroughfares until cross traffic came along … or until a pedestrian wanting to cross the street pushed a button.

Today, a combination of carefully orchestrated automation and higher traffic has made most of these buttons obsolete. Citywide, there are around 100 crosswalk buttons that still work in NYC but close to 1,000 more that do nothing at all. So why not take them down? Removing the remaining nonfunctional buttons would cost the city millions, a potential waste of already limited funds for civic infrastructure….(More)”

Managing Federal Information as a Strategic Resource


White House: “Today the Office of Management and Budget (OMB) is releasing an update to the Federal Government’s governing document for the management of Federal information resources: Circular A-130, Managing Information as a Strategic Resource.

The way we manage information technology(IT), security, data governance, and privacy has rapidly evolved since A-130 was last updated in 2000.  In today’s digital world, we are creating and collecting large volumes of data to carry out the Federal Government’s various missions to serve the American people.  This data is duplicated, stored, processed, analyzed, and transferred with ease.  As government continues to digitize, we must ensure we manage data to not only keep it secure, but also allow us to harness this information to provide the best possible service to our citizens.

Today’s update to Circular A-130 gathers in one resource a wide range of policy updates for Federal agencies regarding cybersecurity, information governance, privacy, records management, open data, and acquisitions.  It also establishes general policy for IT planning and budgeting through governance, acquisition, and management of Federal information, personnel, equipment, funds, IT resources, and supporting infrastructure and services.  In particular, A-130 focuses on three key elements to help spur innovation throughout the government:

  • Real Time Knowledge of the Environment.  In today’s rapidly changing environment, threats and technology are evolving at previously unimagined speeds.  In such a setting, the Government cannot afford to authorize a system and not look at it again for years at a time.  In order to keep pace, we must move away from periodic, compliance-driven assessment exercises and, instead, continuously assess our systems and build-in security and privacy with every update and re-design.  Throughout the Circular, we make clear the shift away from check-list exercises and toward the ongoing monitoring, assessment, and evaluation of Federal information resources.
  • Proactive Risk ManagementTo keep pace with the needs of citizens, we must constantly innovate.  As part of such efforts, however, the Federal Government must modernize the way it identifies, categorizes, and handles risk to ensure both privacy and security.  Significant increases in the volume of data processed and utilized by Federal resources requires new ways of storing, transferring, and managing it Circular A-130 emphasizes the need for strong data governance that encourages agencies to proactively identify risks, determine practical and implementable solutions to address said risks, and implement and continually test the solutions.  This repeated testing of agency solutions will help to proactively identify additional risks, starting the process anew.
  • Shared ResponsibilityCitizens are connecting with each other in ways never before imagined.  From social media to email, the connectivity we have with one another can lead to tremendous advances.  The updated A-130 helps to ensure everyone remains responsible and accountable for assuring privacy and security of information – from managers to employees to citizens interacting with government services. …(More)”

Wikipedia Is A Giant Unfathomable Universe—Now You Can Explore It Like One


Conceptually, Wikiverse isn’t that hard to grasp. Every star in the Wikiverse is first grouped into constellations, representing the articles it is most closely linked to: for example, in the Wikiverse, you might have a constellation of German romantic poets, or a constellation of transgender athletes. From there, these constellations get pulled together into nebula, which represent sub-categories, which in turn get gravitationally drawn towards one another, to form galaxy categories like philosophy, religion, politics, and more. No matter where you are in the Wikiverse, though, you can always zoom way in to click on a star and read it’s associated Wiki entry….Now consider the fact that the Wikiverse is only 1/400,000th the size of the realUniverse, and put into perspective exactly how insignificant the “universe” of human knowledge really is.

Play with the Wikiverse for yourself here.”

Democracy Is Getting A Reboot On The Blockchain


Adele Peters in FastCoExist: “In 2013, a group of activists in Buenos Aires attempted an experiment in what they called hacking democracy. Representatives from their new political party would promise to always vote on issues according to the will of citizens online. Using a digital platform, people could tell the legislator what to support, in a hybrid of a direct democracy and representation.

With 1.2% of the vote, the candidate they ran for a seat on the city council didn’t win. But the open-source platform they created for letting citizens vote, called Democracy OS, started getting attention around the world. In Buenos Aires, the government tried using it to get citizen feedback on local issues. Then, when the party attempted to run a candidate a second time, something happened that made them shift course. They were told they’d have to bribe a federal judge to participate.

“When you see that kind of corruption that you think happens in House of Cards—and you suddenly realize that House of Cards is happening all around you—it’s a very shocking thing,” says Santiago Siri, a programmer and one of the founders of the party, called Partido de la Red, or the Net Party. Siri started thinking about how technology could solve the fundamental problem of corruption—and about how democracy should work in the digital age.

The idea morphed into a Y Combinator-backed nonprofit called Democracy Earth Foundation. As the website explains:

The Internet transformed how we share culture, work together—and even fall in love—but governance has remained unchanged for over 200 years. With the rise of open-source software and peer-to-peer networks, political intermediation is no longer necessary. We are building a protocol with smart contracts that allows decentralized governance for any kind of organization.

Their new platform, which the team is working on now as part of the Fast Forward accelerator for tech nonprofits, starts by granting incorruptible identities to each citizen, and then records votes in a similarly incorruptible way.

“If you know anything about democracy, one of the simplest ways of subverting democracy is by faking identity,” says Siri. “This is about opening up the black box that can corrupt the system. In a democracy, that black box is who gets to count the votes, who gets to validate the identities that have the right to vote.”

While some experts argue that Internet voting isn’t secure enough to use yet, Democracy Earth’s new platform uses the blockchain—a decentralized, public ledger that uses encryption. Rather than recording votes in one place, everyone’s votes are recorded across a network of thousands of computers. The system can also validate identities in the same decentralized way….(More)”.

The ‘who’ and ‘what’ of #diabetes on Twitter


Mariano Beguerisse-Díaz, Amy K. McLennan, Guillermo Garduño-Hernández, Mauricio Barahona, and Stanley J. Ulijaszek at arXiv: “Social media are being increasingly used for health promotion. Yet the landscape of users and messages in such public fora is not well understood. So far, studies have typically focused either on people suffering from a disease, or on agencies that address it, but have not looked more broadly at all the participants in the debate and discussions. We study the conversation about diabetes on Twitter through the systematic analysis of a large collection of tweets containing the term ‘diabetes’, as well as the interactions between their authors. We address three questions: (1) what themes arise in these messages?; (2) who talks about diabetes and in what capacity?; and (3) which type of users contribute to which themes? To answer these questions, we employ a mixed-methods approach, using techniques from anthropology, network science and information retrieval. We find that diabetes-related tweets fall within broad thematic groups: health information, news, social interaction, and commercial. Humorous messages and messages with references to popular culture appear constantly over time, more than any other type of tweet in this corpus. Top ‘authorities’ are found consistently across time and comprise bloggers, advocacy groups and NGOs related to diabetes, as well as stockmarket-listed companies with no specific diabetes expertise. These authorities fall into seven interest communities in their Twitter follower network. In contrast, the landscape of ‘hubs’ is diffuse and fluid over time. We discuss the implications of our findings for public health professionals and policy makers. Our methods are generally applicable to investigations where similar data are available….(More)”

Countries with strong public service media have less rightwing extremism


Tara Conlan in The Guardian: “Countries that have popular, well-funded public service broadcasters encounter less rightwing extremism and corruption and have more press freedom, a report from the European Broadcasting Union has found.

For the first time, an analysis has been done of the contribution of public service media, such as the BBC, to democracy and society.

Following Brexit and the rise in rightwing extremism across Europe, the report shows the impact strong publicly funded television and radio has had on voter turnout, control of corruption and press freedom.

The EBU, which founded Eurovision, carried out the study across 25 countries after noticing that the more well-funded a country’s public service outlets were, the less likely the nation was to endure extremism.

The report says that in “countries where public service media funding … is higher there tends to be more press freedom” and where they have a higher market share “there also tends to be a higher voter turnout”. It also says there is a strong correlation between how much of a country’s market its public service broadcaster has and the “demand for rightwing extremism” and “control of corruption”.

“These correlations are especially interesting given the current public debates about low participation in elections, corruption and the rise of far right politics across Europe,” said EBU head of media intelligence service Roberto Suárez Candel, who conducted the research….(More)”

See also:  PSM Correlations Report  and Trust in Media 2016

The Four-Dimensional Human


Book by Laurence Scott: “You are a four-dimensional human.

Each of us exists in three-dimensional, physical space. But, as a constellation of everyday digital phenomena rewires our lives, we are increasingly coaxed from the containment of our predigital selves into a wonderful and eerie fourth dimension, a world of ceaseless communication, instant information, and global connection.

Our portals to this new world have been wedged open, and the silhouette of a figure is slowly taking shape. But what does it feel like to be four-dimensional? How do digital technologies influence the rhythms of our thoughts, the style and tilt of our consciousness? What new sensitivities and sensibilities are emerging with our exposure to the delights, sorrows, and anxieties of a networked world? And how do we live in public with these recoded private lives?

Laurence Scott—hailed as a “New Generation Thinker” by the Arts and Humanities Research Council and the BBC—shows how this four-dimensional life is dramatically changing us by redefining our social lives and extending the limits of our presence in the world. Blending tech-philosophy with insights on everything from Seinfeld to the fall of Gaddafi, Scott stands with a rising generation of social critics hoping to understand our new reality. His virtuosic debut is a revelatory and original exploration of life in the digital age….(More)”

How Big Data Analytics is Changing Legal Ethics


Renee Knake at Bloomberg Law: “Big data analytics are changing how lawyers find clients, conduct legal research and discovery, draft contracts and court papers, manage billing and performance, predict the outcome of a matter, select juries, and more. Ninety percent of corporate legal departments, law firms, and government lawyers note that data analytics are applied in their organizations, albeit in limited ways, according to a 2015 survey. The Legal Services Corporation, the largest funder of civil legal aid for low-income individuals in the United States, recommended in 2012 that all states collect and assess data on case progress/outcomes to improve the delivery of legal services. Lawyers across all sectors of the market increasingly recognize how big data tools can enhance their work.

A growing literature advocates for businesses and governmental bodies to adopt data ethics policies, and many have done so. It is not uncommon to find data-use policies prominently displayed on company or government websites, or required a part of a click-through consent before gaining access to a mobile app or webpage. Data ethics guidelines can help avoid controversies, especially when analytics are used in potentially manipulative or exploitive ways. Consider, for example, Target’s data analytics that uncovered a teen’s pregnancy before her father did, or Orbitz’s data analytics offered pricier hotels to Mac users. These are just two of numerous examples in recent years where companies faced criticism for how they used data analytics.

While some law firms and legal services organizations follow data-use policies or codes of conduct, many do not. Perhaps this is because the legal profession was not transformed as early or rapidly as other industries, or because until now, big data in legal was largely limited to e-discovery, where the data use is confined to the litigation and is subject to judicial oversight. Another reason may be that lawyers believe their rules of professional conduct provide sufficient guidance and protection. Unlike other industries, lawyers are governed by a special code of ethical obligations to clients, the justice system, and the public. In most states, this code is based in part upon the American Bar Association (ABA) Model Rules of Professional Conduct, though rules often vary from jurisdiction to jurisdiction. Several of the Model Rules are relevant to big data use. That said, the Model Rules are insufficient for addressing a number of fundamental ethical concerns.

At the moment, legal ethics for big data analytics is at best an incomplete mix of professional conduct rules and informal policies adopted by some, but not all law practices. Given the increasing prevalence of data analytics in legal services, lawyers and law students should be familiar not only with the relevant professional conduct rules, but also the ethical questions left unanswered. Listed below is a brief summary of both, followed by a proposed legal ethics agenda for data analytics. …

Questions Unanswered by Lawyer Ethics Rules 

Access/Ownership. Who owns the original data — the individual source or the holder of the pooled information? Who owns the insights drawn from its analysis? Who should receive access to the data compilation and the results?

Anonymity/Identity. Should all personally identifiable or sensitive information be removed from the data? What protections are necessary to respect individual autonomy? How should individuals be able to control and shape their electronic identity?

Consent. Should individuals affirmatively consent to use of their personal data? Or is it sufficient to provide notice, perhaps with an opt-out provision?

Privacy/Security. Should privacy be protected beyond the professional obligation of client confidentiality? How should data be secured? The ABA called upon private and public sector lawyers to implement cyber-security policies, including data use, in a 2012resolution and produced a cyber-security handbook in 2013.

Process. How involved should lawyers be in the process of data collection and analysis? In the context of e-discovery, for example, a lawyer is expected to understand how documents are collected, produced, and preserved, or to work with a specialist. Should a similar level of knowledge be required for all forms of data analytics use?

Purpose. Why was the data first collected from individuals? What is the purpose for the current use? Is there a significant divergence between the original and secondary purposes? If so, is it necessary for the individuals to consent to the secondary purpose? How will unintended consequences be addressed?

Source. What is the source of the data? Did the lawyer collect it directly from clients, or is the lawyer relying upon a third-party source? Client-based data is, of course, subject to the lawyer’s professional conduct rules. Data from any source should be trustworthy, reasonable, timely, complete, and verifiable….(More)”