18,815 research outputs found

    Public preferences for electronic health data storage, access, and sharing - evidence from a pan-European survey.

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    OBJECTIVE: To assess the public's preferences regarding potential privacy threats from devices or services storing health-related personal data. MATERIALS AND METHODS: A pan-European survey based on a stated-preference experiment for assessing preferences for electronic health data storage, access, and sharing. RESULTS: We obtained 20 882 survey responses (94 606 preferences) from 27 EU member countries. Respondents recognized the benefits of storing electronic health information, with 75.5%, 63.9%, and 58.9% agreeing that storage was important for improving treatment quality, preventing epidemics, and reducing delays, respectively. Concerns about different levels of access by third parties were expressed by 48.9% to 60.6% of respondents.On average, compared to devices or systems that only store basic health status information, respondents preferred devices that also store identification data (coefficient/relative preference 95% CI = 0.04 [0.00-0.08], P = 0.034) and information on lifelong health conditions (coefficient = 0.13 [0.08 to 0.18], P < 0.001), but there was no evidence of this for devices with information on sensitive health conditions such as mental and sexual health and addictions (coefficient = -0.03 [-0.09 to 0.02], P = 0.24). Respondents were averse to their immediate family (coefficient = -0.05 [-0.05 to -0.01], P = 0.011) and home care nurses (coefficient = -0.06 [-0.11 to -0.02], P = 0.004) viewing this data, and strongly averse to health insurance companies (coefficient = -0.43 [-0.52 to 0.34], P < 0.001), private sector pharmaceutical companies (coefficient = -0.82 [-0.99 to -0.64], P < 0.001), and academic researchers (coefficient = -0.53 [-0.66 to -0.40], P < 0.001) viewing the data. CONCLUSIONS: Storing more detailed electronic health data was generally preferred, but respondents were averse to wider access to and sharing of this information. When developing frameworks for the use of electronic health data, policy makers should consider approaches that both highlight the benefits to the individual and minimize the perception of privacy risks.This study has received funding from the European Commission’s Seventh Framework Programme for research, technological development, and demonstration under grant agreement No. 285635 (Public perception of security and privacy: Assessing knowledge, Collecting evidence, Translating research into action)

    Public preferences for internet surveillance, data retention and privacy enhancing services: evidence from a pan-European study

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    This paper examines public preferences regarding privacy implications of internet surveillance. The study was based on a pan-European survey and included a stated preference discrete choice experiment (SPDCE) involving the choice of an Internet Service Provider (ISP) offering varying levels of storage, access and sharing of internet activity, continuous surveillance and privacy enhancing technologies. The survey obtained 16,463 individual responses across the European Union's 27 member-states1. Respondents expressed highest levels of concern about: Internet facilitated crime, namely using the internet to share and publish child pornography (68.2%); individual data protection and security threats – i.e., personal information not being handled in a legitimate way (62%); computer viruses (61.4%) and finally the theft of financial data or identity (61.4%). Such levels of concern affect trust in the Internet: 27.7% of respondents trusted websites for information exchange and a similar figure, 30.7% reported they trust websites for business transactions. Given this context, following our analysis of preferences, on average, respondents were more likely to choose an ISP that would not store any internet activity, would retain any data for up to 1 month and would not share data with anyone else. Interestingly, respondents did recognise the potential benefit for continuous state-surveillance (by the police), but only under an appropriate accountable legal basis. Also, respondents were in favour of an array of privacy enhancing technologies that would enhance their privacy when using the Internet. Finally, the analysis shows that in some cases, significant differences in preferences across countries and socio-economic characteristics suggest that individual privacy-preferences do vary across cultural/national settings, age, gender and education level

    Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.

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    INTRODUCTION: International sharing of health data opens the door to the study of the so-called 'Big Data', which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a 'social license' is identifying the views patients and the public may hold with regard to data sharing for health research. METHODS: We performed a narrative review of the empirical evidence addressing patients' and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients' and public attitudes were extracted from selected references and thematically categorised. RESULTS: Twenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread-though conditional-support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability. CONCLUSIONS: Our results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests

    Electronic Identity in Europe: Legal challenges and future perspectives (e-ID 2020)

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    This deliverable presents the work developed by the IPTS eID Team in 2012 on the large-encompassing topic of electronic identity. It is structured in four different parts: 1) eID: Relevance, Le-gal State-of-the-Art and Future Perspectives; 2) Digital Natives and the Analysis of the Emerging Be-havioral Trends Regarding Privacy, Identity and Their Legal Implications; 3) The "prospective" use of social networking services for government eID in Europe; and 4) Facial Recognition, Privacy and Iden-tity in Online Social Networks.JRC.J.3-Information Societ

    The Benefits and Costs of Online Privacy Legislation

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    Many people are concerned that information about their private life is more readily available and more easily captured on the Internet as compared to offline technologies. Specific concerns include unwanted email, credit card fraud, identity theft, and harassment. This paper analyzes key issues surrounding the protection of online privacy. It makes three important contributions: First, it provides the most comprehensive assessment to date of the estimated benefits and costs of regulating online privacy. Second, it provides the most comprehensive evaluation of legislation and legislative proposals in the U.S. aimed at protecting online privacy. Finally, it offers some policy prescriptions for the regulation of online privacy and suggests areas for future research. After analyzing the current debate on online privacy and assessing the potential costs and benefits of proposed regulations, our specific recommendations concerning the government's involvement in protecting online privacy include the following: The government should fund research that evaluates the effectiveness of existing privacy legislation before considering new regulations. The government should not generally regulate matters of privacy differently based on whether an issue arises online or offline. The government should not require a Web site to provide notification of its privacy policy because the vast majority of commercial U.S.-based Web sites already do so. The government should distinguish between how it regulates the use and dissemination of highly sensitive information, such as certain health records or Social Security numbers, versus more general information, such as consumer name and purchasing habits. The government should not require companies to provide consumers broad access to the personal information that is collected online for marketing purposes because the benefits do not appear to be significant and the costs could be quite high. The government should make it easier for the public to obtain information on online privacy and the tools available for consumers to protect their own privacy. The message of this paper is not that online privacy should be unregulated, but rather that policy makers should think through their options carefully, weighing the likely costs and benefits of each proposal.

    Semantic discovery and reuse of business process patterns

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    Patterns currently play an important role in modern information systems (IS) development and their use has mainly been restricted to the design and implementation phases of the development lifecycle. Given the increasing significance of business modelling in IS development, patterns have the potential of providing a viable solution for promoting reusability of recurrent generalized models in the very early stages of development. As a statement of research-in-progress this paper focuses on business process patterns and proposes an initial methodological framework for the discovery and reuse of business process patterns within the IS development lifecycle. The framework borrows ideas from the domain engineering literature and proposes the use of semantics to drive both the discovery of patterns as well as their reuse

    Public preferences for digital health data sharing: Discrete choice experiment study in 12 european countries

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    Background: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public s views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level. Objective: This study investigated public preferences for digital health data sharing. Methods: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class s pooled and regional data sets. Results: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: A national authority or academic research project as the data user; being informed and asked to consent; and a review process for data transfer and use, or transfer only. On the other hand, collection of their data by a technological company and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions. Conclusions: This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe
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