“Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

Curated on Posted on by Stefaan Verhulst

Paper by Jessica Stockdale, Jackie Cassell and Elizabeth Ford: “The use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK, and technological innovation in analytical methods for new discoveries using these data resources is developing quickly. Data scientists have developed, and are improving, many ways to extract and process information in medical records. This continues to lead to an exciting range of health related discoveries, improving population health and saving lives. Nevertheless, as the development of analytic technologies accelerates, the decision-making and governance environment as well as public views and understanding about this work, has been lagging behind1.

Public opinion and data use

A range of small studies canvassing patient views, mainly in the USA, have found an overall positive orientation to the use of patient data for societal benefit2–7. However, recent case studies, like NHS England’s ill-fated Care.data scheme, indicate that certain schemes for secondary data use can prove unpopular in the UK. Launched in 2013, Care.data aimed to extract and upload the whole population’s general practice patient records to a central database for prevalence studies and service planning8. Despite the stated intention of Care.data to “make major advances in quality and patient safety”8, this programme was met with a widely reported public outcry leading to its suspension and eventual closure in 2016. Several factors may have been involved in this failure, from the poor public communication about the project, lack of social licence9, or as pressure group MedConfidential suggests, dislike of selling data to profit-making companies10. However, beyond these specific explanations for the project’s failure, what ignited public controversy was a concern with the impact that its aim to collect and share data on a large scale might have on patient privacy. The case of Care.data indicates a reluctance on behalf of the public to share their patient data, and it is still not wholly clear whether the public are willing to accept future attempts at extracting and linking large datasets of medical information. The picture of mixed opinion makes taking an evidence-based position, drawing on social consensus, difficult for legislators, regulators, and data custodians who may respond to personal or media generated perceptions of public views. However, despite differing results of studies canvassing public views, we hypothesise that there may be underlying ethical principles that could be extracted from the literature on public views, which may provide guidance to policy-makers for future data-sharing….(More)”.

Does good governance foster trust in government? A panel data analysis

Curated on Posted on by Stefaan Verhulst

Paper by Jonathan Spiteri and Marie Briguglio: “This study examines the relationship between good governance and trust in government. It sets out to test which aspects of good governance, if any, foster strong trust in government. We construct a panel data set drawn from 29 European countries over the period 2004 to 2015. The data set includes measures of government trust, six different dimensions of good governance, as well as variables on GDP growth and income inequality.

We find that freedom of expression and citizen involvement in the democratic process, to be the good governance dimension that has the strongest relationship with government trust, across all specifications of our regression models. We also find that real GDP growth rates have a significant (albeit weaker) relationship with trust in government. Our results suggest that certain elements of good governance foster trust in government over and above that generated by economic success. We discuss the implications of these findings in light of declining levels of public trust in government around the world….(More)”.

Machine Learning and the Rule of Law

Curated on Posted on by Stefaan Verhulst

Paper by Daniel L. Chen: “Predictive judicial analytics holds the promise of increasing the fairness of law. Much empirical work observes inconsistencies in judicial behavior. By predicting judicial decisions—with more or less accuracy depending on judicial attributes or case characteristics—machine learning offers an approach to detecting when judges most likely to allow extra legal biases to influence their decision making. In particular, low predictive accuracy may identify cases of judicial “indifference,” where case characteristics (interacting with judicial attributes) do no strongly dispose a judge in favor of one or another outcome. In such cases, biases may hold greater sway, implicating the fairness of the legal system….(More)”

Outcomes of open government: Does an online platform improve citizens’ perception of local government?

Curated on Posted on by Stefaan Verhulst

Paper by Lisa Schmidthuber et al: “Governments all over the world have implemented citizensourcing initiatives to integrate citizens into decision-making processes. A more participative decision-making process is associated with an open government and assumed to benefit public service quality and interactive value creation. The purpose of this paper is to highlight the outcomes of open government initiatives and ask to what extent open government participation is related to perceived outcomes of open government....

Data conducted from a survey among users of a citizensourcing platform and platform data are used to perform non-parametric analyses and examine the relationship between platform participation and perceived outcomes of open government....

The findings of this paper suggest that active platform usage positively relates to several outcomes perceived by citizens, such as improved information flow, increased trust in and satisfaction with local government. In contrast, repetitive participation does not significantly relate to users’ outcome evaluation….(More)”.

Can I Trust the Data I See? A Physician’s Concern on Medical Data in IoT Health Architectures

Curated on Posted on by Stefaan Verhulst

Conference Paper by Fariha Tasmin Jaigirdar, Carsten Rudolph, and Chris Bain: “With the increasing advancement of Internet of Things (IoT) enabled systems, smart medical devices open numerous opportunities for the healthcare sector. The success of using such devices in the healthcare industry depends strongly on secured and reliable medical data transmission. Physicians diagnose that data and prescribe medicines and/or give guidelines/instructions/treatment plans for the patients. Therefore, a physician is always concerned about the medical data trustworthiness, because if it is not guaranteed, a savior can become an involuntary foe! This paper analyses two different scenarios to understand the real-life consequences in IoT-based healthcare (IoT-Health) application. Appropriate sequence diagrams for both scenarios show data movement as a basis for determining necessary security requirements in each layer of IoT-Health.

We analyse the individual entities of the overall system and develop a system-wide view of trust in IoT-Health. The security analysis pinpoints the research gap in end-to-end trust and indicates the necessity to treat the whole IoT-Health system as an integrated entity. This study highlights the importance of integrated cross-layer security solutions that can deal with the heterogeneous security architectures of IoT healthcare system and finally identifies a possible solution for the open question raised in the security analysis with appropriate future research directions….(More)”.

A Survey on Sentiment Analysis

Curated on Posted on by Stefaan Verhulst

Paper by Siva Parvathi and Yjn Lakshmi: “Sentiment analysis or Opinion mining is one of the quickest developing fields with its call for and potential advantages growing every day. With the onset of the internet and modern technology, there has been a vigorous growth in the quantity of statistics. Each character is capable of specific his/her personal ideas freely on social media. All of this facts may be analyzed and used that allows you to draw benefits and high-quality statistics.

One such idea is sentiment analysis, here, the sentiment of the problem is taken into consideration and important facts is drawn out whether it be a product evaluation or his/her opinion on whatever materialistic. A few of such packages of sentiment evaluation and the method in which they’re carried out are defined. Moreover,the possibility of every of those works to impact any destiny work is considered and explained along with the analysis as to how the previous troubles in the equal area have been overcome….(More)”.

Blockchain Economics

Curated on Posted on by Stefaan Verhulst

NBER Working Paper by Joseph Abadi and Markus Brunnermeier: “When is record-keeping better arranged through a blockchain than through a traditional centralized intermediary? The ideal qualities of any record-keeping system are (i) correctness, (ii) decentralization, and (iii) cost efficiency. We point out a blockchain trilemma: no ledger can satisfy all three properties simultaneously.

A centralized record-keeper extracts rents due to its monopoly on the ledger. Its franchise value dynamically incentivizes correct reporting. Blockchains drive down rents by allowing for free entry of record-keepers and portability of information to competing “forks.” Blockchains must, therefore, provide static incentives for correctness through computationally expensive proof-of-work algorithms and permit record-keepers to roll back history in order to undo fraudulent reports. While blockchains can keep track of ownership transfers, enforcement of possession rights is often better complemented by centralized record-keeping….(More)”

Nudge, Boost or Design? Limitations of behavioral policy under social interaction.

Curated on Posted on by Stefaan Verhulst

Paper by Samuli Reijula, Jaakko Kuorikoski et al: “Nudge and boost are two competing approaches to applying the psychology of reasoning and decision making to improve policy. Whereas nudges rely on manipulation of choice architecture to steer people towards better choices, the objective of boosts is to develop good decision-making competences. Proponents of both approaches claim capacity to enhance social welfare through better individual decisions.

We suggest that such efforts should involve a more careful analysis of how individual and social welfare are related in the policy context. First, individual rationality is not always sufficient or necessary for improving collective outcomes. Second, collective outcomes of complex social interactions among individuals are largely ignored by the focus of both nudge and boost on individual decisions. We suggest that the design of mechanisms and social norms can sometimes lead to better collective outcomes than nudge and boost, and present conditions under which the three approaches (nudge, boost, and design) can be expected to enhance social welfare….(More)”.

Participation 2.0? Crowdsourcing Participatory Development @ DFID

Curated on Posted on by Stefaan Verhulst

Paper by Anke Schwittay, Paul Braund: “Through an empirical analysis of Amplify, a crowdsourcing platform funded by the UK’s Department for International Development (DFID), we examine the potential of ICTs to afford more participatory development. Especially interactive Web2.0 technologies are often assumed to enable the participation of marginalized groups in their development, through allowing them to modify content and generate their own communication. 

We use the concepts of platform politics and voice to show that while Amplify managers and designers invested time and resources to include the voices of Amplify beneficiaries on the platform and elicit their feedback on projects supported via the platform, no meaningful participation took place. Our analysis of the gaps between participatory rhetoric, policy and practice concludes with suggestions for how ICTs could be harnessed to contribute to meaningful participatory development that matters materially and politically.,,,(More)”

The democratic potential of civic applications

Curated on Posted on by Stefaan Verhulst

Paper by Jäske, Maija and Ertiö, Titiana: “Recently, digital democratic applications have increased in presence and scope. This study clarifies how civic applications – bottom-up technologies that use open data to solve governance and policy challenges – can contribute to democratic governance. While civic applications claim to deepen democracy, systematic frameworks for assessing the democratic potential of civic apps are missing, because apps are often evaluated against technical criteria. This study introduces a framework for evaluating the democratic potential of civic apps, distinguishing six criteria: inclusiveness, deliberation, influence, publicity, mobilization, and knowledge production. The framework is applied to a case study of the Finnish DataDemo competition in 2014 by analyzing the institutional design features of six civic applications. It is argued that in terms of democratic governance, the greatest potential of civic apps lies in enhancing publicity and mobilization, while they should not be expected to increase inclusiveness or direct influence in decisions. Thus, our study contributes to understanding how civic applications can improve democracy in times of open data abundance….(More)”.