Personal Data for the Public Good

Curated on Posted on by Stefaan Verhulst

Final report on “New Opportunities to Enrich Understanding of Individual and Population Health” of the health data exploration project: “Individuals are tracking a variety of health-related data via a growing number of wearable devices and smartphone apps. More and more data relevant to health are also being captured passively as people communicate with one another on social networks, shop, work, or do any number of activities that leave “digital footprints.”
Almost all of these forms of “personal health data” (PHD) are outside of the mainstream of traditional health care, public health or health research. Medical, behavioral, social and public health research still largely rely on traditional sources of health data such as those collected in clinical trials, sifting through electronic medical records, or conducting periodic surveys.
Self-tracking data can provide better measures of everyday behavior and lifestyle and can fill in gaps in more traditional clinical data collection, giving us a more complete picture of health. With support from the Robert Wood Johnson Foundation, the Health Data Exploration (HDE) project conducted a study to better understand the barriers to using personal health data in research from the individuals who track the data about their own personal health, the companies that market self-track- ing devices, apps or services and aggregate and manage that data, and the researchers who might use the data as part of their research.
Perspectives
Through a series of interviews and surveys, we discovered strong interest in contributing and using PHD for research. It should be noted that, because our goal was to access individuals and researchers who are already generating or using digital self-tracking data, there was some bias in our survey findings—participants tended to have more educa- tion and higher household incomes than the general population. Our survey also drew slightly more white and Asian participants and more female participants than in the general population.
Individuals were very willing to share their self-tracking data for research, in particular if they knew the data would advance knowledge in the fields related to PHD such as public health, health care, computer science and social and behavioral science. Most expressed an explicit desire to have their information shared anonymously and we discovered a wide range of thoughts and concerns regarding thoughts over privacy.
Equally, researchers were generally enthusiastic about the potential for using self-tracking data in their research. Researchers see value in these kinds of data and think these data can answer important research questions. Many consider it to be of equal quality and importance to data from existing high quality clinical or public health data sources.
Companies operating in this space noted that advancing research was a worthy goal but not their primary business concern. Many companies expressed interest in research conducted outside of their company that would validate the utility of their device or application but noted the critical importance of maintaining their customer relationships. A number were open to data sharing with academics but noted the slow pace and administrative burden of working with universities as a challenge.
In addition to this considerable enthusiasm, it seems a new PHD research ecosystem may well be emerging. Forty-six percent of the researchers who participated in the study have already used self-tracking data in their research, and 23 percent of the researchers have already collaborated with application, device, or social media companies.
The Personal Health Data Research Ecosystem
A great deal of experimentation with PHD is taking place. Some individuals are experimenting with personal data stores or sharing their data directly with researchers in a small set of clinical experiments. Some researchers have secured one-off access to unique data sets for analysis. A small number of companies, primarily those with more of a health research focus, are working with others to develop data commons to regularize data sharing with the public and researchers.
SmallStepsLab serves as an intermediary between Fitbit, a data rich company, and academic research- ers via a “preferred status” API held by the company. Researchers pay SmallStepsLab for this access as well as other enhancements that they might want.
These promising early examples foreshadow a much larger set of activities with the potential to transform how research is conducted in medicine, public health and the social and behavioral sciences.
Opportunities and Obstacles
There is still work to be done to enhance the potential to generate knowledge out of personal health data:

  • Privacy and Data Ownership: Among individuals surveyed, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data, and over 90% of respondents said that it was important that the data be anonymous. Further, while some didn’t care who owned the data they generate, a clear majority wanted to own or at least share owner- ship of the data with the company that collected it.
  • InformedConsent:Researchersareconcerned about the privacy of PHD as well as respecting the rights of those who provide it. For most of our researchers, this came down to a straightforward question of whether there is informed consent. Our research found that current methods of informed consent are challenged by the ways PHD are being used and reused in research. A variety of new approaches to informed consent are being evaluated and this area is ripe for guidance to assure optimal outcomes for all stakeholders.
  • Data Sharing and Access: Among individuals, there is growing interest in, as well as willingness and opportunity to, share personal health data with others. People now share these data with others with similar medical conditions in online groups like PatientsLikeMe or Crohnology, with the intention to learn as much as possible about mutual health concerns. Looking across our data, we find that individuals’ willingness to share is dependent on what data is shared, how the data will be used, who will have access to the data and when, what regulations and legal protections are in place, and the level of compensation or benefit (both personal and public).
  • Data Quality: Researchers highlighted concerns about the validity of PHD and lack of standard- ization of devices. While some of this may be addressed as the consumer health device, apps and services market matures, reaching the optimal outcome for researchers might benefit from strategic engagement of important stakeholder groups.

We are reaching a tipping point. More and more people are tracking their health, and there is a growing number of tracking apps and devices on the market with many more in development. There is overwhelming enthusiasm from individuals and researchers to use this data to better understand health. To maximize personal data for the public good, we must develop creative solutions that allow individual rights to be respected while providing access to high-quality and relevant PHD for research, that balance open science with intellectual property, and that enable productive and mutually beneficial collaborations between the private sector and the academic research community.”

Expanding Opportunity through Open Educational Resources

Curated on Posted on by Stefaan Verhulst

Hal Plotkin and Colleen Chien at the White House: “Using advanced technology to dramatically expand the quality and reach of education has long been a key priority for the Obama Administration.
In December 2013, the President’s Council of Advisors on Science and Technology (PCAST) issued a report exploring the potential of Massive Open Online Courses (MOOCs) to expand access to higher education opportunities. Last month, the President announced a $2B down payment, and another $750M in private-sector commitments to deliver on the President’s ConnectEd initiative, which will connect 99% of American K-12 students to broadband by 2017 at no cost to American taxpayers.
This week, we are happy to be joining with educators, students, and technologists worldwide to recognize and celebrate Open Education Week.
Open Educational Resources (“OER”) are educational resources that are released with copyright licenses allowing for their free use, continuous improvement, and modification by others. The world is moving fast, and OER enables educators and students to access, customize, and remix high-quality course materials reflecting the latest understanding of the world and materials that incorporate state of the art teaching methods – adding their own insights along the way. OER is not a silver bullet solution to the many challenges that teachers, students and schools face. But it is a tool increasingly being used, for example by players like edX and the Kahn Academy, to improve learning outcomes and create scalable platforms for sharing educational resources that reach millions of students worldwide.
Launched at MIT in 2001, OER became a global movement in 2007 when thousands of educators around the globe endorsed the Cape Town Declaration on Open Educational Resources. Another major milestone came in 2011, when Secretary of Education Arne Duncan and then-Secretary of Labor Hilda Solis unveiled the four-year, $2B Trade Adjustment Assistance Community College and Career Training Grant Program (TAACCCT). It was the first Federal program to leverage OER to support the development of a new generation of affordable, post-secondary educational programs that can be completed in two years or less to prepare students for careers in emerging and expanding industries….
Building on this record of success, OSTP and the U.S. Agency for International Development (USAID) are exploring an effort to inspire and empower university students through multidisciplinary OER focused on one of the USAID Grand Challenges, such as securing clean water, saving lives at birth, or improving green agriculture. This effort promises to  be a stepping stone towards leveraging OER to help solve other grand challenges such as the NAE Grand Challenges in Engineering or Grand Challenges in Global Health.
This is great progress, but there is more work to do. We look forward to keeping the community updated right here. To see the winning videos from the U.S. Department of Education’s “Why Open Education Matters” Video Contest, click here.”

Lean Urbanism

Curated on Posted on by Stefaan Verhulst

at O’Reilly Radar: “Through an interesting confluence, I recently came across three different instances of the same question: what is the “minimum viable product” for urban renewal? Last Monday, I visited the O’Reilly Media office in the old Pfizer building in Brooklyn, and was struck by how unfinished space was side by side with finished, how the remnants of the old laboratory had not been removed but rather just incorporated into the existing space. It is a kind of urban office-steading, pioneering a gritty frontier, as opposed to a more standard style of development in which the building is stripped, upgraded, and then opened to tenants, perhaps with a bit more character than an all-new building but with substantially the same sanitized promise. I posted photos and some reflections on Google+.
The next day, I sat in on a webinar with Carol Coletta of the Knight Foundation and Andres Duany of  the Project for Lean Urbanism. Duany’s idea is for “pink zones,” where, for purposes of exploratory redevelopment, red tape might be thinned out. The goal is to find what regulations really matter — and which don’t — and to start fresh to see if we can achieve urban renewal at lower cost.
When I told Jen Pahlka about the webinar, she pointed me to a TEDx talk by Jason Roberts on ”tactical urbanism.” While Duany is engaged in trying to work with cities to create lighter weight regulatory regimes for redevelopment, Jason and his compatriots just do it. They flout regulations and then invite city officials in to see the difference it makes. The whole talk is great, but if it’s too long, watch from about seven minutes in, for an account of how Jason and crew reconstructed a block with popup shops, plants, and outdoor seating, to show what it could become. Particularly striking is the schedule of fees the city of Dallas charges for improvements that, if anything, the city should be paying to people who are willing to improve the neighborhood….
The exploration of what the startup community has come to call “lean” is critical for our rethinking of government as well. It breaks the stalemate between “government is too big and intrusive” and “but look at how many market failures there are — government must intervene,” and instead asks both government and citizens to perform experiments, to learn what works, and to make it easier to do the things that do work for us as a society.”

Why the wealthiest countries are also the most open with their data

Curated on Posted on by Stefaan Verhulst
Emily Badger in the Washington Post: “The Oxford Internet Institute this week posted a nice visualization of the state of open data in 70 countries around the world, reflecting the willingness of national governments to release everything from transportation timetables to election results to machine-readable national maps. The tool is based on the Open Knowledge Foundation’s Open Data Index, an admittedly incomplete but telling assessment of who willingly publishes updated, accurate national information on, say, pollutants (Sweden) and who does not (ahem, South Africa).

Oxford Internet Institute
Tally up the open data scores for these 70 countries, and the picture looks like this, per the Oxford Internet Institute (click on the picture to link through to the larger interactive version):
Oxford Internet Institute
…With apologies for the tiny, tiny type (and the fact that many countries aren’t listed here at all), a couple of broad trends are apparent. For one, there’s a prominent global “openness divide,” in the words of the Oxford Internet Institute. The high scores mostly come from Europe and North America, the low scores from Asia, Africa and Latin America. Wealth is strongly correlated with “openness” by this measure, whether we look at World Bank income groups or Gross National Income per capita. By the OII’s calculation, wealth accounts for about a third of the variation in these Open Data Index scores.
Perhaps this is an obvious correlation, but the reasons why open data looks like the luxury of rich economies are many, and they point to the reality that poor countries face a lot more obstacles to openness than do places like the United States. For one thing, openness is also closely correlated with Internet penetration. Why open your census results if people don’t have ways to access it (or means to demand it)? It’s no easy task to do this, either.”

The intelligent citizen

Curated on Posted on by Stefaan Verhulst

John Bell in AlJazeera: “A quarter century after the demise of the Soviet Union, is the Western model of government under threat? …. The pressures are coming from several directions.
All states are feeling the pressure from unregulated global flows of capital that create obscene concentrations of wealth, and an inability of the nation-state to respond.Relatedly, citizens either ignore or distrust traditional institutions, and ethnic groups demand greater local autonomy.
A recent Pew survey shows that Americans aged 18-33 mostly identify as political independents and distrust institutions. The classic model is indeed frayed, and new developments have made it feel like very old cloth.
One natural reflex is to assert even greater control, a move suited to the authoritarians, such as China, Russia or General Abdel Fattah al-Sisi‘s Egypt: Strengthen the nation by any means to withstand the pressures. The reality, however, is that all systems, democracies or otherwise, were designed for an industrial age, and the management of an anonymous mass, and cannot cope with globalised economics and the information world of today.
The question remains: What can effectively replace the Western model? The answer may not lie only in the invention of new structures, but in the improvement of a key component found in all: The citizen.
The citizen today is mostly a consumer, focused on the purchase of goods or services, or the insistent consumption of virtual information, often as an ersatz politics. Occasionally, when a threat rises, he or she also becomes a demandeur of absolute security from the state. Indeed, some are using the new technologies for democratic purposes, they are better informed, criticise abuse or corruption, and organise and rally movements.
But, the vast majority is politically disengaged and cynical of political process; many others are too busy trying to survive to even care. A grand apathy has set in, the stage left vacant for a very few extremists, or pied pipers of the old tunes of nationalisms and tribal belonging disguised as leaders. The citizen is either invisible in this circus, an endangered species in the 21st century, or increasingly drawn to dark and polarising forces.
Some see the glass as half full and believe that technology and direct democracy can bridge the gaps. Indeed, the internet provides a plethora of information and a greater sense of empowerment. Lesser-known protests in Bosnia have led to direct democracy plenums, and the Swiss do revert to national referenda. However, whether direct or representative, democracy will still depend on the quality of the citizen, and his or her decisions.
Opinion, dogma and bias
Opinion, dogma and bias remain common political operating system and, as a result, our politics are still an unaffordable game of chance. The optimists may be right, but discussions in social media on issues ranging from Ukraine to gun control reveal more deep bias and the lure of excitement than the pursuit of a constructive answer.
People crave excitement in their politics. Whether it is through asserting their own opinion or in battling others, politics offers a great ground for this high. The cost, however, comes in poor judgment and dangerous decisions. George W. Bush was elected twice, Vladimir Putin has much support, climate change is denied, and an intoxicated Mayor of Toronto, Rob Ford, may be re-elected.
Few are willing to admit their role in this state of affairs, but they will gladly see the ill in others. Even fewer, including often myself, will admit that they don’t really know how to think through a challenge, political or otherwise. This may seem absurd, thinking feels as natural as walking, but the formation of political opinion is a complex affair, a flawed duet between our minds and outside input. Media, government propaganda, family, culture, and our own unique set of personal experiences, from traumas to chance meetings, all play into the mix. High states of emotion, “excitement”, also weigh in, making us dumb and easily manipulated….
This step may also be a precursor for another that involves the ordinary person. Today being a citizen involves occasional voting, politics as spectator sport, and, among some, being a watchdog against corruption or street activism. What may be required is more citizens’ participation in local democracy, not just in assemblies or casting votes, but in local management and administration.
This will help people understand the complexities of politics, gain greater responsibility, and mitigate some of the vices of centralisation and representative democracy. It may also harmonise with the information age, where everyone, it seems, wishes to be empowered.
Do people have time in their busy lives? A rotational involvement in local affairs can help solve this, and many might even find the engagement enjoyable. This injection of a real citizen into the mix may improve the future of politics while large institutions continue to hum their tune.
In the end, a citizen who has responsibility for his actions can probably make any structure work, while rejecting any that would endanger his independence and dignity. The rise of a more intelligent and committed citizen may clarify politics, improve liberal democracies, and make populism and authoritarianism less appealing and likely paths.”

Practices of Freedom: Decentred Governance, Conflict and Democratic Participation

Curated on Posted on by Stefaan Verhulst

New book by Steven Griggs,Aletta J. Norval, and Hendrik Wagenaar: “The shift from government to governance has become a starting point for many studies of contemporary policy-making and democracy. Practices of Freedom takes a different approach, calling into question this dominant narrative and taking the variety, hybridity and dispersion of social and political practices as its focus of analysis. Bringing together leading scholars in democratic theory and critical policy studies, it draws upon new understandings of radical democracy, practice and interpretative analysis to emphasise the productive role of actors and political conflict in the formation and reproduction of contemporary forms of democratic governance. Integrating theoretical dialogues with detailed empirical studies, this book examines spaces for democratisation, institutional design, democratic criteria and learning, whilst mobilising the frameworks of agonistic and aversive democracy, informality and decentred legitimacy in cases from youth engagement to the Israeli-Palestinian conflict.

  • Integrates topics including democratic theory, policy theory and social conflict to offer an interdisciplinary perspective on governance
  • Challenges assumptions about contemporary governance, reconnecting its practices with the wider civil society in which they are embedded
  • Detailed case studies of decentred governance illustrate theoretical points in real-world situations”

The Next Frontier in Crowdsourcing: Your Smartphone

Curated on Posted on by Stefaan Verhulst

Rachel Metz in MIT TechnologyReview: “Rather than swiping the screen or entering a passcode to unlock the smartphone in my hand, I have to tell it how energetic the people around me are feeling by tapping one of four icons. I’m the only one here, and the one that best fits my actual energy level, to be honest, is a figure lying down and emitting a trail of z’s.
I’m trying out an Android app called Twitch. Created by Stanford researchers, it asks you to complete a few simple tasks—contributing information, as with the reported energy levels, or performing simple tasks like ranking images or structuring data extracted from Wikipedia pages—each time you unlock your phone. The information collected by apps like Twitch could be useful to academics, market researchers, or local businesses. Such software could also provide a low-cost way to perform useful work that can easily be broken up into pieces and fed to millions of devices.

Twitch is one of several projects exploring crowdsourcing via the lock screen. Plenty of people already contribute freely to crowdsourcing websites like Wikipedia and Quora or paid services like Amazon’s Mechanical Turk, and the sustained popularity of traffic app Waze shows that people are willing to contribute to a common cause from their handsets if it provides a timely, helpful result.
There are certainly enough smartphones with lock screens ready to be harnessed. According to data from market researcher comScore, 160 million people in the U.S.—or 67 percent of cell phone users—have smartphones, and nearly 52 percent of these run Google’s Android OS, which allows apps like Twitch to replace the standard lock screen….”

Protect the open web and the promise of the digital age

Curated on Posted on by Stefaan Verhulst

Richard Waters in the Financial Times:  “There is much to be lost if companies and nations put up fences around our digital open plains
For all the drawbacks, it is not hard to feel nostalgic about the early days of the web. Surfing between slow-loading, badly designed sites on a dial-up internet connection running at 56 kilobits per second could be frustrating. No wonder it was known as the “world wide wait”. But the “wow” factor was high. There was unparalleled access to free news and information, even if some of it was deeply untrustworthy. Then came that first, revelatory search on Google, which untangled the online jumble with almost miraculous speed.
Later, an uproarious outbreak of blogs converted what had been a passive medium into a global rant. And, with YouTube and Facebook, a mass audience found digital self-expression for the first time.
As the world wide web turns 25, it is easy to take all this for granted. For a generation that has grown up digital, it is part of the fabric of life.
It is also easy to turn away without too many qualms. More than 80 per cent of time spent on smartphones and tablets does not involve the web at all: it is whiled away in apps, which offer the instant gratification that comes from a tap or swipe of a finger.
Typing a URL on a small device, trying to stretch or shrink a web page to fit the small screen, browsing through Google links in a mobile browser: it is all starting to seem so, well, anachronistic.
But if the world wide web is coming to play a smaller part in everyday life, the significance of its relative decline should be kept in perspective. After all, the web is only one of the applications that rides on top of the internet: it is the standards and technologies of the internet itself that provide the main foundation for the modern, connected world. As long as all bits flow freely (and cheaply), the promise of the digital age will remain intact.
Before declaring the web era over and moving on, however, it is worth dwelling on what it represents – and what could be lost if this early manifestation of digital life were to be consigned to history.
Sir Tim Berners-Lee, who wrote the technical paper a quarter of a century ago that laid out the architecture of the web, certainly senses the threat. The open technical standards and open access that lie at the heart of the web – based on the freedom to link any online document to any other – are not guaranteed. What is needed, he argued this week, is nothing less than a digital bill of rights: a statement that would enshrine the ideals on which the medium was founded.
As this suggests, the web has always been much more than a technology. It is a state of mind, a dream of participation, a call to digital freedom that transcends geography. What place it finds in the connected world of tomorrow will help define what it means to be a digital citizen…”

Online tools for engaging citizens in the legislative process

Curated on Posted on by Stefaan Verhulst

Andrew Mandelbaum  from OpeningParliament.org: “Around the world, parliaments, governments, civil society organizations, and even individual parliamentarians, are taking measures to make the legislative process more participatory. Some are creating their own tools — often open source, which allows others to use these tools as well — that enable citizens to markup legislation or share ideas on targeted subjects. Others are purchasing and implementing tools developed by private companies to good effect. In several instances, these initiatives are being conducted through collaboration between public institutions and civil society, while many compliment online and offline experiences to help ensure that a broader population of citizens is reached.
The list below provides examples of some of the more prominent efforts to engage citizens in the legislative process.
Brazil
Implementer: Brazilian Chamber of Deputies…
Website: http://edemocracia.camara.gov.br/
Additional Information: OpeningParliament.org Case Study
Estonia
Implementer: Estonian President & Civil Society
Project Name: Rahvakogu (The People’s Assembly)…
Website: http://www.rahvakogu.ee/
Additional Information: Enhancing Estonia’s Democracy Through Rahvakogu
Finland
Implementer: Finnish Parliament
Project Name: Inventing Finland again! (Keksitään Suomi uudelleen!)…
Website: http://www.suomijoukkoistaa.fi/
Additional Information: Democratic Participation and Deliberation in Crowdsourced Legislative Processes: The Case of the Law on Off-Road Traffic in Finland
France
Implementer: SmartGov – Démocratie Ouverte…
Website: https://www.parlement-et-citoyens.fr/
Additional Information: OpeningParliament Case Study
Italy
Implementer: Government of Italy
Project Name: Public consultation on constitutional reform…
Website: http://www.partecipa.gov.it/
Spain
Implementer: Basque Parliament…
Website: http://www.adi.parlamentovasco.euskolegebiltzarra.org/es/
Additional Information: Participation in Parliament
United Kingdom
Implementer: Cabinet Office
Project Name: Open Standards Consultation…
Website: http://consultation.cabinetoffice.gov.uk/openstandards/
Additional Information: Open Policy Making, Open Standards Consulation; Final Consultation Documents
United States
Implementer: OpenGov Foundation
Project Name: The Madison Project
Tool: The Madison Project“

Computational Social Science: Exciting Progress and Future Directions

Curated on Posted on by Stefaan Verhulst

Duncan Watts in The Bridge: “The past 15 years have witnessed a remarkable increase in both the scale and scope of social and behavioral data available to researchers. Over the same period, and driven by the same explosion in data, the study of social phenomena has increasingly become the province of computer scientists, physicists, and other “hard” scientists. Papers on social networks and related topics appear routinely in top science journals and computer science conferences; network science research centers and institutes are sprouting up at top universities; and funding agencies from DARPA to NSF have moved quickly to embrace what is being called computational social science.
Against these exciting developments stands a stubborn fact: in spite of many thousands of published papers, there’s been surprisingly little progress on the “big” questions that motivated the field of computational social science—questions concerning systemic risk in financial systems, problem solving in complex organizations, and the dynamics of epidemics or social movements, among others.
Of the many reasons for this state of affairs, I concentrate here on three. First, social science problems are almost always more difficult than they seem. Second, the data required to address many problems of interest to social scientists remain difficult to assemble. And third, thorough exploration of complex social problems often requires the complementary application of multiple research traditions—statistical modeling and simulation, social and economic theory, lab experiments, surveys, ethnographic fieldwork, historical or archival research, and practical experience—many of which will be unfamiliar to any one researcher. In addition to explaining the particulars of these challenges, I sketch out some ideas for addressing them….”