New Voluntary Code: Guidance for Sharing Data Between Organisations

by Alison Holt 08/01/2016

For data sharing between organisations to be straight forward, there needs to a common understanding of basic policy and practice.

by Alison Holt 08/01/2016

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 Code, anchored in the developing ISO standards for the Governance of Data. She discusses the voluntary code, and the need to provide urgent advice to organisations struggling with policy for sharing data. Collecting, storing and distributing digital data is significantly easier and cheaper now than ever before, in line with predictions from Moore, Kryder and Gilder. Organisations are incentivised to collect large volumes of data with the hope of unleashing new business opportunities or maybe even new businesses. Consider the likes of Uber, Netflix, and Airbnb and the other data mongers who have built services based solely on digital assets. The use of this new abundant data will continue to disrupt traditional business models for years to come, and there is no doubt that these large data volumes can provide value. However, they also bring associated risks (such as unplanned disclosure and hacks) and they come with constraints (for example in the form of privacy or data protection legislation). Hardly a week goes by without a data breach hitting the headlines. Even if your telecommunications provider didn’t inadvertently share your bank account and sort code with hackers, and your child wasn’t one of the hundreds of thousands of children whose birthdays, names, and photos were exposed by a smart toy company, you might still be wondering exactly how your data is being looked after by the banks, schools, clinics, utility companies, local authorities and government departments that are so quick to collect your digital details. Then there are the companies who have invited you to sign away the rights to your data and possibly your…

Politics & Government, Social Data Science

How big data is breathing new life into the smart cities concept

by Jonathan Bright 23/07/2015

If all the cars have GPS devices, all the people have mobile phones, and all opinions are expressed on social media, then do we really need the city to be smart at all?

by Jonathan Bright 23/07/2015

“Big data” is a growing area of interest for public policy makers: for example, it was highlighted in UK Chancellor George Osborne’s recent budget speech as a major means of improving efficiency in public service delivery. While big data can apply to government at every level, the majority of innovation is currently being driven by local government, especially cities, who perhaps have greater flexibility and room to experiment and who are constantly on a drive to improve service delivery without increasing budgets. Work on big data for cities is increasingly incorporated under the rubric of “smart cities”. The smart city is an old(ish) idea: give urban policymakers real time information on a whole variety of indicators about their city (from traffic and pollution to park usage and waste bin collection) and they will be able to improve decision making and optimise service delivery. But the initial vision, which mostly centred around adding sensors and RFID tags to objects around the city so that they would be able to communicate, has thus far remained unrealised (big up front investment needs and the requirements of IPv6 are perhaps the most obvious reasons for this). The rise of big data—large, heterogeneous datasets generated by the increasing digitisation of social life—has however breathed new life into the smart cities concept. If all the cars have GPS devices, all the people have mobile phones, and all opinions are expressed on social media, then do we really need the city to be smart at all? Instead, policymakers can simply extract what they need from a sea of data which is already around them. And indeed, data from mobile phone operators has already been used for traffic optimisation, Oyster card data has been used to plan London Underground service interruptions, sewage data has been used to estimate population levels, the examples go on. However, at the moment these examples remain largely anecdotal, driven forward by a few…

Health, Social Data Science, Wellbeing

How can big data be used to advance dementia research?

by admin 16/03/2015

As dementia is believed to be influenced by a wide range of social, environmental and lifestyle-related factors, this behavioural data has the potential to improve early diagnosis

by admin 16/03/2015

Image by K. Kendall of "Sights and Scents at the Cloisters: for people with dementia and their care partners"; a program developed in consultation with the Taub Institute for Research on Alzheimer's Disease and the Aging Brain, Alzheimer's Disease Research Center at Columbia University, and the Alzheimer's Association.

Dementia affects about 44 million individuals, a number that is expected to nearly double by 2030 and triple by 2050. With an estimated annual cost of USD 604 billion, dementia represents a major economic burden for both industrial and developing countries, as well as a significant physical and emotional burden on individuals, family members and caregivers. There is currently no cure for dementia or a reliable way to slow its progress, and the G8 health ministers have set the goal of finding a cure or disease-modifying therapy by 2025. However, the underlying mechanisms are complex, and influenced by a range of genetic and environmental influences that may have no immediately apparent connection to brain health. Of course medical research relies on access to large amounts of data, including clinical, genetic and imaging datasets. Making these widely available across research groups helps reduce data collection efforts, increases the statistical power of studies and makes data accessible to more researchers. This is particularly important from a global perspective: Swedish researchers say, for example, that they are sitting on a goldmine of excellent longitudinal and linked data on a variety of medical conditions including dementia, but that they have too few researchers to exploit its potential. Other countries will have many researchers, and less data. ‘Big data’ adds new sources of data and ways of analysing them to the repertoire of traditional medical research data. This can include (non-medical) data from online patient platforms, shop loyalty cards, and mobile phones — made available, for example, through Apple’s ResearchKit, just announced last week. As dementia is believed to be influenced by a wide range of social, environmental and lifestyle-related factors (such as diet, smoking, fitness training, and people’s social networks), and this behavioural data has the potential to improve early diagnosis, as well as allow retrospective insights into events in the years leading up to a diagnosis. For example, data on changes in shopping…

Politics & Government

Why does the Open Government Data agenda face such barriers?

by Chris Martin 26/01/2015

Reflect upon the barriers preventing the OGD agenda from making a breakthrough into the mainstream.

by Chris Martin 26/01/2015

Advocates hope that opening government data will increase government transparency, catalyse economic growth, address social and environmental challenges. Image by the UK's Open Data Institute.

Advocates of Open Government Data (OGD)—that is, data produced or commissioned by government or government-controlled entities that can be freely used, reused and redistributed by anyone—talk about the potential of such data to increase government transparency, catalyse economic growth, address social and environmental challenges and boost democratic participation. This heady mix of potential benefits has proved persuasive to the UK Government (and governments around the world). Over the past decade, since the emergence of the OGD agenda, the UK Government has invested extensively in making more of its data open. This investment has included £10 million to establish the Open Data Institute and a £7.5 million fund to support public bodies overcome technical barriers to releasing open data. Yet the transformative impacts claimed by OGD advocates, in government as well as NGOs such as the Open Knowledge Foundation, still seem a rather distant possibility. Even the more modest goal of integrating the creation and use of OGD into the mainstream practices of government, businesses and citizens remains to be achieved. In my recent article Barriers to the Open Government Data Agenda: Taking a Multi-Level Perspective (Policy & Internet 6:3) I reflect upon the barriers preventing the OGD agenda from making a breakthrough into the mainstream. These reflections centre on the five key finds of a survey exploring where key stakeholders within the UK OGD community perceive barriers to the OGD agenda. The key messages from the UK OGD community are that: 1. Barriers to the OGD agenda are perceived to be widespread Unsurprisingly, given the relatively limited impact of OGD to date, my research shows that barriers to the OGD agenda are perceived to be widespread and numerous in the UK’s OGD community. What I find rather more surprising is the expectation, amongst policy makers, that these barriers ought to just melt away when exposed to the OGD agenda’s transparently obvious value and virtue. Given that the breakthrough of the…

Ethics, Governance & Security

Designing Internet technologies for the public good

by Ian Brown 08/10/2014

People are very often unaware of how much data is gathered about them—let alone the purposes for which it can be used.

by Ian Brown 08/10/2014

MEPs failed to support a Green call to protect Edward Snowden as a whistleblower, in order to allow him to give his testimony to the European Parliament in March. Image by greensefa.

Computers have developed enormously since the Second World War: alongside a rough doubling of computer power every two years, communications bandwidth and storage capacity have grown just as quickly. Computers can now store much more personal data, process it much faster, and rapidly share it across networks. Data is collected about us as we interact with digital technology, directly and via organisations. Many people volunteer data to social networking sites, and sensors—in smartphones, CCTV cameras, and “Internet of Things” objects—are making the physical world as trackable as the virtual. People are very often unaware of how much data is gathered about them—let alone the purposes for which it can be used. Also, most privacy risks are highly probabilistic, cumulative, and difficult to calculate. A student sharing a photo today might not be thinking about a future interview panel; or that the heart rate data shared from a fitness gadget might affect future decisions by insurance and financial services (Brown 2014). Rather than organisations waiting for something to go wrong, then spending large amounts of time and money trying (and often failing) to fix privacy problems, computer scientists have been developing methods for designing privacy directly into new technologies and systems (Spiekermann and Cranor 2009). One of the most important principles is data minimisation; that is, limiting the collection of personal data to that needed to provide a service—rather than storing everything that can be conveniently retrieved. This limits the impact of data losses and breaches, for example by corrupt staff with authorised access to data—a practice that the UK Information Commissioner’s Office (2006) has shown to be widespread. Privacy by design also protects against function creep (Gürses et al. 2011). When an organisation invests significant resources to collect personal data for one reason, it can be very tempting to use it for other purposes. While this is limited in the EU by data protection law, government agencies are in a…

Ethics, Politics & Government

Responsible research agendas for public policy in the era of big data

by Vicki Nash 19/09/2013

Bringing together leading social science academics with senior government agency staff to discuss its public policy potential.

by Vicki Nash 19/09/2013

Last week the OII went to Harvard. Against the backdrop of a gathering storm of interest around the potential of computational social science to contribute to the public good, we sought to bring together leading social science academics with senior government agency staff to discuss its public policy potential. Supported by the OII-edited journal Policy and Internet and its owners, the Washington-based Policy Studies Organization (PSO), this one-day workshop facilitated a thought-provoking conversation between leading big data researchers such as David Lazer, Brooke Foucault-Welles and Sandra Gonzalez-Bailon, e-government experts such as Cary Coglianese, Helen Margetts and Jane Fountain, and senior agency staff from US federal bureaus including Labor Statistics, Census, and the Office for the Management of the Budget. It’s often difficult to appreciate the impact of research beyond the ivory tower, but what this productive workshop demonstrated is that policy-makers and academics share many similar hopes and challenges in relation to the exploitation of ‘big data’. Our motivations and approaches may differ, but insofar as the youth of the ‘big data’ concept explains the lack of common language and understanding, there is value in mutual exploration of the issues. Although it’s impossible to do justice to the richness of the day’s interactions, some of the most pertinent and interesting conversations arose around the following four issues. Managing a diversity of data sources. In a world where our capacity to ask important questions often exceeds the availability of data to answer them, many participants spoke of the difficulties of managing a diversity of data sources. For agency staff this issue comes into sharp focus when available administrative data that is supposed to inform policy formulation is either incomplete or inadequate. Consider, for example, the challenge of regulating an economy in a situation of fundamental data asymmetry, where private sector institutions track, record and analyse every transaction, whilst the state only has access to far more basic performance metrics and accounts.…

Governance & Security

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

by Jeremy Crump 22/04/2013

As the cost and size of devices falls and network access becomes ubiquitous, it is evident that not only major industries but whole areas of consumption, public service and domestic life will be capable of being transformed.

by Jeremy Crump 22/04/2013

The 2nd Annual Internet of Things Europe 2010: A Roadmap for Europe, 2010. Image by Pierre Metivier.

On 17 April 2013, the US Federal Trade Commission published a call for inputs on the ‘consumer privacy and security issues posed by the growing connectivity of consumer devices, such as cars, appliances, and medical devices’, in other words, about the impact of the Internet of Things (IoT) on the everyday lives of citizens. The call is in large part one for information to establish what the current state of technology development is and how it will develop, but it also looks for views on how privacy risks should be weighed against potential societal benefits. There’s a lot that’s not very new about the IoT. Embedded computing, sensor networks and machine to machine communications have been around a long time. Mark Weiser was developing the concept of ubiquitous computing (and prototyping it) at Xerox PARC in 1990. Many of the big ideas in the IoT—smart cars, smart homes, wearable computing—are already envisaged in works such as Nicholas Negroponte’s Being Digital, which was published in 1995 before the mass popularisation of the internet itself. The term ‘Internet of Things’ has been around since at least 1999. What is new is the speed with which technological change has made these ideas implementable on a societal scale. The FTC’s interest reflects a growing awareness of the potential significance of the IoT, and the need for public debate about its adoption. As the cost and size of devices falls and network access becomes ubiquitous, it is evident that not only major industries but whole areas of consumption, public service and domestic life will be capable of being transformed. The number of connected devices is likely to grow fast in the next few years. The Organisation for Economic Co-operation and Development (OECD) estimates that while a family with two teenagers may have 10 devices connected to the internet, in 2022 this may well grow to 50 or more. Across the OECD area the number of…

Health, Publications, Wellbeing

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

by Rik Crutzen 24/05/2012

Policymakers wishing to promote greater choice and control among health system users should take account of the limits to empowerment as well as barriers to participation.

by Rik Crutzen 24/05/2012

The explosive growth of the Internet and its omnipresence in people’s daily lives has facilitated a shift in information seeking on health, with the Internet now a key information source for the general public, patients, and health professionals. The Internet also has obvious potential to drive major changes in the organisation and delivery of health services efforts, and many initiatives are harnessing technology to support user empowerment. For example, current health reforms in England are leading to a fragmented, marketised National Health Service (NHS), where competitive choice designed to drive quality improvement and efficiency savings is informed by transparency and patient experiences, and with the notion of an empowered health consumer at its centre. Is this aim of achieving user empowerment realistic? In their examination of health queries submitted to the NHS Direct online enquiry service, John Powell and Sharon Boden find that while patient empowerment does occur in the use of online health services, it is constrained and context dependent. Policymakers wishing to promote greater choice and control among health system users should therefore take account of the limits to empowerment as well as barriers to participation. The Dutch government’s online public national health and care portal similarly aims to facilitate consumer decision-making behaviour and increasing transparency and accountability to improve quality of care and functioning of health markets. Interestingly, Hans Ossebaard, Lisette van Gemert-Pijnen and Erwin Seydel find the influence of the Dutch portal on choice behaviour, awareness, and empowerment of users to actually be small. The Internet is often discussed in terms of empowering (or even endangering) patients through broadening of access to medical and health-related information, but there is evidence that concerns about serious negative effects of using the Internet for health information may be ill-founded. The cancer patients in the study by Alison Chapple, Julie Evans and Sue Ziebland gave few examples of harm from using the Internet or of damage caused to their relationships…

data-sharing