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New Voluntary Code: Guidance for Sharing Data Between Organisations

New Voluntary Code: Guidance for Sharing Data Between Organisations

Many organisations are coming up with their own internal policy and guidelines for data sharing. However, for data sharing between organisations to be straight forward, there needs to a common understanding of basic policy and practice. During her time as an OII Visiting Associate, Alison Holt developed a pragmatic solution in the form of a Voluntary […]

How can big data be used to advance dementia research?

Dementia affects about 44 million individuals today, a number that is expected to triple by 2050. To date there is no cure or treatment. Ulrike Deetjen, Eric T. Meyer and Ralph Schroeder discuss the findings of an OECD-commissioned project to evaluate current best practices of data sharing in research on neurodegenerative diseases, for which they interviewed 37 experts from academia, government and other sectors. The final report was presented to the G7 health ministers at the First WHO Ministerial Conference on Global Action Against Dementia in Geneva on 16-17 March 2015.

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Designing Internet technologies for the public good

The ongoing development of computing, communications and storage technologies presents a challenge to privacy protection, given the increasing ease with which personal data can be collected, analysed, stored, and shared. OII Professor Ian Brown discusses how “privacy by design” techniques such as data minimisation can provide a template for societies that wish to ensure the continued protection of core social values in an increasingly technology-mediated world. Full article: Keeping our secrets? Designing Internet technologies for the public good.

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Young people are the most likely to take action to protect their privacy on social networking sites

There is a widespread impression that younger people are less concerned with privacy than older people; indeed, that “privacy is no longer a social norm”. Is this really true? OII Research Fellow Grant Blank discusses results from a representative sample from Britain to find that (contrary to conventional wisdom) young people are actually more likely to have taken action to protect their privacy than older people. A full discussion can be found in his paper (with G.Bolsover and E.Dubois): A New Privacy Paradox: Young people and privacy on social network sites.

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Past and Emerging Themes in Policy and Internet Studies

What kind of research does the journal Policy & Internet publish? Editor Vili Lehdonvirta approaches the question from two angles; first, by examining the question empirically, through a brief thematic analysis of the articles published since its launch in 2009; second, by considering what kind of research the journal is likely to publish in the future, both in terms of what kind of trends can be seen emerging in policy and Internet research, as well as in terms of what challenges outlined in the journal’s original vision that continue to be pertinent today. Read the full editorial.

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Unpacking patient trust in the “who” and the “how” of Internet-based health records

Digital health records create new opportunities for access and sharing, and carry the promise of reducing costs and improving quality of care across health systems worldwide. At the same time, they also cause nightmares to patients concerned about their privacy – while patient trust is key to successful adoption and use. Ulrike Rauer, author of the Policy & Internet article Patient Trust in Internet-based Health Records: An Analysis across Operator Types and Levels of Patient Involvement in Germany, takes a closer look at the structural and institutional factors influencing patient trust in Internet-based health records.

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Ethical privacy guidelines for mobile connectivity measurements

To make sense of today’s increasingly complex Internet architecture, network researchers collect and share datasets of network measurements, from detailed individual-level traces to data aggregated on a regional level. The OII’s Ben Zevenbergen discusses the recommendations of the Ethical Privacy Guidelines for Mobile Connectivity Measurements project, which is aimed at helping network researchers navigate the challenges of preserving the privacy of data subjects, publishing and disseminating datasets, while adhering to and advancing good scientific practice.

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The scramble for Africa’s data

Africa is fast becoming a source of ‘big data’, however there are big holes in the governance of the technology. The OII’s Linnet Taylor asks what can incentivise African countries’ citizens and policymakers to address privacy in parallel with (rather than after) the collection of massive amounts of personal data, how to devise privacy framework models for groups with restricted access to technology, and how such a system can be participatory enough to be relevant to the needs of particular countries and populations.

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Time for debate about the societal impact of the Internet of Things

Despite the growing ubiquity and connectivity of the consumer devices and other objects that make up the “Internet of Things”, very little is understood about the likely social impacts of the technology. Jeremy Crump is chair of the BCS Internet of Things working group and a Director at Cisco Systems. In February 2013 he chaired a joint BCS-OII seminar on the societal impact of the Internet of Things with Ian Brown (OII); a summary of the contributions is published on the BCS website.

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eHealth: what is needed at the policy level? New special issue from Policy and Internet

Rik Crutzen of Maastricht University, Guest Editor (with Gordon Gao, of the University of Maryland) of Policy and Internet’s special issue on eHealth, discusses the policy insights of the papers published in the issue, which cover such issues as the effectiveness of national policies aimed at empowering users, patient trust in electronic health records, and user engagement with online health information.

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