Give Up Your Data to Cure Disease

Curated on Posted on by Stefaan Verhulst

David B. Agus in The New York Times: “How far would you go to protect your health records? Your privacy matters, of course, but consider this: Mass data can inform medicine like nothing else and save countless lives, including, perhaps, your own.

Over the past several years, using some $30 billion in federal stimulus money, doctors and hospitals have been installing electronic health record systems. ….Yet neither doctors nor patients are happy. Doctors complain about the time it takes to update digital records, while patients worry about confidentiality…

We need to get over it. These digital databases offer an incredible opportunity to examine trends that will fundamentally change how doctors treat patients. They will help develop cures, discover new uses for drugs and better track the spread of scary new illnesses like the Zika virus….

Case in point: Last year, a team led by researchers at the MD Anderson Cancer Center and Washington University found that a common class of heart drugs called beta blockers, which block the effects of adrenaline, may prolong ovarian cancer patients’ survival. This discovery came after the researchers reviewed more than 1,400 patient records, and identified an obvious pattern among those with ovarian cancer who were using beta blockers, most often to control their blood pressure. Women taking earlier versions of this class of drug typically lived for almost eight years after their cancer diagnosis, compared with just three and a half years for the women not taking any beta blocker….

We need to move past that. For one thing, more debate over data sharing is already leading to more data security. Last month a bill was signed into law calling for the Department of Health and Human Services to create a health care industry cybersecurity task force, whose members would hammer out new voluntary standards.

New technologies — and opportunities — come with unprecedented risks and the need for new policies and strategies. We must continue to improve our encryption capabilities and other methods of data security and, most important, mandate that they are used. The hack of the Anthem database last year, for instance, which allowed 80 million personal records to be accessed, was shocking not only for the break-in, but for the lack of encryption….

Medical research is making progress every day, but the next step depends less on scientists and doctors than it does on the public. Each of us has the potential to be part of tomorrow’s cures. (More)”

The Promise and Perils of Open Medical Data

Curated on Posted on by Stefaan Verhulst
Sharona Hoffman at the Hastings Center: “Not long ago I visited the Personal Genome Project’s website. The PGP describes its mission as “creating public genome, health, and trait data.” In the “Participant Profiles” section, I found several entries that disclosed the names of individuals along with their date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, medical procedures, and more. Other profiles did not feature names but provided all of the other details. I had no special access to this information. It is available to absolutely anyone with Internet access. The PGP is part of a trend known as “open data.” Many government and private entities have launched initiatives to compile very large data resources (also known as “big data”) and to make them available to the public. President Obama himself has endorsed open data by issuing a May 2013 executive order directing that, to the extent permitted by law, the federal government must release its data to the public in forms that make it easy to locate, access, and use.

Read more:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=7731#ixzz3zOSM2kF0

Designing a toolkit for policy makers

Curated on Posted on by Stefaan Verhulst

 at UK’s Open Policy Making Blog: “At the end of the last parliament, the Cabinet Office Open Policy Making team launched the Open Policy Making toolkit. This was about giving policy makers the actual tools that will enable them to develop policy that is well informed, creative, tested, and works. The starting point was addressing their needs and giving them what they had told us they needed to develop policy in an ever changing, fast paced and digital world. In a way, it was the culmination of the open policy journey we have been on with departments for the past 2 years. In the first couple of months we saw thousands of unique visits….

Our first version toolkit has been used by 20,000 policy makers. This gave us a huge audience to talk to to make sure that we continue to meet the needs of policy makers and keep the toolkit relevant and useful. Although people have really enjoyed using the toolkit, user testing quickly showed us a few problems…

We knew what we needed to do. Help people understand what Open Policy Making was, how it impacted their policy making, and then to make it as simple as possible for them to know exactly what to do next.

So we came up with some quick ideas on pen and paper and tested them with people. We quickly discovered what not to do. People didn’t want a philosophy— they wanted to know exactly what to do, practical answers, and when to do it. They wanted a sort of design manual for policy….

How do we make user-centered design and open policy making as understood as agile?

We decided to organise the tools around the journey of a policy maker. What might a policy maker need to understand their users? How could they co-design ideas? How could they test policy? We looked at what tools and techniques they could use at the beginning, middle and end of a project, and organised tools accordingly.

We also added sections to remove confusion and hesitation. Our opening section ‘Getting started with Open Policy Making’ provides people with a clear understanding of what open policy making might mean to them, but also some practical considerations. Sections for limited timeframes and budgets help people realise that open policy can be done in almost any situation.

And finally we’ve created a much cleaner and simpler design that lets people show as much or little of the information as they need….

So go and check out the new toolkit and make more open policy yourselves….(More)”

Innovating and changing the policy-cycle: Policy-makers be prepared!

Curated on Posted on by Stefaan Verhulst

Marijn Janssen and Natalie Helbig in Government Information Quarterly: “Many policy-makers are struggling to understand participatory governance in the midst of technological changes. Advances in information and communication technologies (ICTs) continue to have an impact on the ways that policy-makers and citizens engage with each other throughout the policy-making process. A set of developments in the areas of opening government data, advanced analytics, visualization, simulation, and gaming, and ubiquitous citizen access using mobile and personalized applications is shaping the interactions between policy-makers and citizens. Yet the impact of these developments on the policy-makers is unclear. The changing roles and need for new capabilities required from the government are analyzed in this paper using two case studies. Salient new roles for policy-makers are outlined focused on orchestrating the policy-making process. Research directions are identified including understand the behavior of users, aggregating and analyzing content from scattered resources, and the effective use of the new tools. Understanding new policy-makers roles will help to bridge the gap between the potential of tools and technologies and the organizational realities and political contexts. We argue that many examples are available that enable learning from others, in both directions, developed countries experiences are useful for developing countries and experiences from the latter are valuable for the former countries…(More)”

Collective Intelligence in Law Reforms: When the Logic of the Crowds and the Logic of Policymaking Collide

Curated on Posted on by Stefaan Verhulst

Paper by Tanja Aitamurto: “…shows how the two virtues of collective intelligence – cognitive diversity and large crowds –turn into perils in crowdsourced policymaking. That is because of a conflict between the logic of the crowds and the logic of policymaking. The crowd’s logic differs from that of traditional policymaking in several aspects. To mention some of those: In traditional policymaking it is a small group of experts making proposals to the policy, whereas in crowdsourced policymaking, it is a large, anonymous crowd with a mixed level of expertise. The crowd proposes atomic ideas, whereas traditional policymaking is used to dealing with holistic and synthesized proposals. By drawing on data from a crowdsourced law-making process in Finland, the paper shows how the logics of the crowds and policymaking collide in practice. The conflict prevents policymaking fully benefiting from the crowd’s input, and it also hinders governments from adopting crowdsourcing more widely as a practice for deploying open policymaking practices….(More)”

Privacy, security and data protection in smart cities: a critical EU law perspective

Curated on Posted on by Stefaan Verhulst

CREATe Working Paper by Lilian Edwards: “Smart cities” are a buzzword of the moment. Although legal interest is growing, most academic responses at least in the EU, are still from the technological, urban studies, environmental and sociological rather than legal, sectors2 and have primarily laid emphasis on the social, urban, policing and environmental benefits of smart cities, rather than their challenges, in often a rather uncritical fashion3 . However a growing backlash from the privacy and surveillance sectors warns of the potential threat to personal privacy posed by smart cities . A key issue is the lack of opportunity in an ambient or smart city environment for the giving of meaningful consent to processing of personal data; other crucial issues include the degree to which smart cities collect private data from inevitable public interactions, the “privatisation” of ownership of both infrastructure and data, the repurposing of “big data” drawn from IoT in smart cities and the storage of that data in the Cloud.

This paper, drawing on author engagement with smart city development in Glasgow as well as the results of an international conference in the area curated by the author, argues that smart cities combine the three greatest current threats to personal privacy, with which regulation has so far failed to deal effectively; the Internet of Things(IoT) or “ubiquitous computing”; “Big Data” ; and the Cloud. While these three phenomena have been examined extensively in much privacy literature (particularly the last two), both in the US and EU, the combination is under-explored. Furthermore, US legal literature and solutions (if any) are not simply transferable to the EU because of the US’s lack of an omnibus data protection (DP) law. I will discuss how and if EU DP law controls possible threats to personal privacy from smart cities and suggest further research on two possible solutions: one, a mandatory holistic privacy impact assessment (PIA) exercise for smart cities: two, code solutions for flagging the need for, and consequences of, giving consent to collection of data in ambient environments….(More)

A Taxonomy of Open Government Data Research Areas and Topics

Curated on Posted on by Stefaan Verhulst

Paper by Yannis Charalabidis, Charalampos Alexopoulos & Euripidis Loukis in  the Journal of Organizational Computing and Electronic Commerce: “The opening of government data, in order to have both social and economic value generated from them, has attracted the attention and interest of both researchers and practitioners from various disciplines, such as information systems, management sciences, political and social sciences, and law. Despite the rapid growth of this multidisciplinary research domain, which has led to the emergence and continuous evolution of technologies and management approaches for open government data (OGD), a detailed analysis of the specific areas and topics of this research is still missing. In this paper, a detailed taxonomy of research areas and corresponding research topics of the OGD domain is presented: it includes four main research areas (ODG management & policies, infrastructures, interoperability and usage & value), which are further analysed into 35 research topics. An important advantage of this taxonomy, beyond its high level of detail, is that it has been developed through extraction and combination of relevant knowledge from three different kinds of sources: important relevant government policy documents, research literature, and experts. For each of the 35 research topics we have identified, its research literature is summarized and main research objectives and directions are highlighted. Based on the above taxonomy, an extension of the extant OGD lifecycle is advanced; also, under-researched topics that require further research are identified….(More)”

Daedalus Issue on “The Internet”

Curated on Posted on by Stefaan Verhulst

Press release: “Thirty years ago, the Internet was a network that primarily delivered email among academic and government employees. Today, it is rapidly evolving into a control system for our physical environment through the Internet of Things, as mobile and wearable technology more tightly integrate the Internet into our everyday lives.

How will the future Internet be shaped by the design choices that we are making today? Could the Internet evolve into a fundamentally different platform than the one to which we have grown accustomed? As an alternative to big data, what would it mean to make ubiquitously collected data safely available to individuals as small data? How could we attain both security and privacy in the face of trends that seem to offer neither? And what role do public institutions, such as libraries, have in an environment that becomes more privatized by the day?

These are some of the questions addressed in the Winter 2016 issue of Daedalus on “The Internet.”  As guest editors David D. Clark (Senior Research Scientist at the MIT Computer Science and Artificial Intelligence Laboratory) and Yochai Benkler (Berkman Professor of Entrepreneurial Legal Studies at Harvard Law School and Faculty Co-Director of the Berkman Center for Internet and Society at Harvard University) have observed, the Internet “has become increasingly privately owned, commercial, productive, creative, and dangerous.”

Some of the themes explored in the issue include:

  • The conflicts that emerge among governments, corporate stakeholders, and Internet users through choices that are made in the design of the Internet
  • The challenges—including those of privacy and security—that materialize in the evolution from fixed terminals to ubiquitous computing
  • The role of public institutions in shaping the Internet’s privately owned open spaces
  • The ownership and security of data used for automatic control of connected devices, and
  • Consumer demand for “free” services—developed and supported through the sale of user data to advertisers….

Essays in the Winter 2016 issue of Daedalus include:

  • The Contingent Internet by David D. Clark (MIT)
  • Degrees of Freedom, Dimensions of Power by Yochai Benkler (Harvard Law School)
  • Edge Networks and Devices for the Internet of Things by Peter T. Kirstein (University College London)
  • Reassembling Our Digital Selves by Deborah Estrin (Cornell Tech and Weill Cornell Medical College) and Ari Juels (Cornell Tech)
  • Choices: Privacy and Surveillance in a Once and Future Internet by Susan Landau (Worcester Polytechnic Institute)
  • As Pirates Become CEOs: The Closing of the Open Internet by Zeynep Tufekci (University of North Carolina at Chapel Hill)
  • Design Choices for Libraries in the Digital-Plus Era by John Palfrey (Phillips Academy)…(More)

See also: Introduction

Privacy in Public Spaces: What Expectations of Privacy Do We Have in Social Media Intelligence?

Curated on Posted on by Stefaan Verhulst

Paper by Edwards, Lilian and Urquhart, Lachlan: “In this paper we give a basic introduction to the transition in contemporary surveillance from top down traditional police surveillance to profiling and “pre-crime” methods. We then review in more detail the rise of open source (OSINT) and social media (SOCMINT) intelligence and its use by law enforcement and security authorities. Following this we consider what if any privacy protection is currently given in UK law to SOCMINT. Given the largely negative response to the above question, we analyse what reasonable expectations of privacy there may be for users of public social media, with reference to existing case law on art 8 of the ECHR. Two factors are in particular argued to be supportive of a reasonable expectation of privacy in open public social media communications: first, the failure of many social network users to perceive the environment where they communicate as “public”; and secondly, the impact of search engines (and other automated analytics) on traditional conceptions of structured dossiers as most problematic for state surveillance. Lastly, we conclude that existing law does not provide adequate protection foropen SOCMINT and that this will be increasingly significant as more and more personal data is disclosed and collected in public without well-defined expectations of privacy….(More)”

Digilantism: An Analysis of Crowdsourcing and the Boston Marathon Bombings

Curated on Posted on by Stefaan Verhulst

Paper by Johnny Nhan et al: “This paper explores the aftermath of the Boston Marathon bombing incident and how members of the general public, through the online community Reddit, attempted to provide assistance to law enforcement through conducting their own parallel investigations. As we document through an analysis of user posts, Reddit members shared information about the investigation, searched for information that would identify the perpetrators and, in some cases, drew on their own expert knowledge to uncover clues concerning key aspects of the attack. Although it is the case that the Reddit cyber-sleuths’ did not ultimately solve this case, or provide significant assistance to the police investigation, their actions suggest the potential role the public could play within security networks….(More)”