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

Abstract 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.

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Middleware for Preserving Privacy in Big Data

Advances in Data Mining and Database Management - Handbook of Research on Cloud Infrastructures for Big Data Analytics ◽

10.4018/978-1-4666-5864-6.ch017 ◽

2014 ◽

pp. 419-443 ◽

Cited By ~ 4

Author(s):

M. Thilagavathi ◽

Daphne Lopez ◽

B. Senthil Murugan

Keyword(s):

Big Data ◽

Health Care Providers ◽

Personal Data ◽

Health Data ◽

Cloud Services ◽

Security And Privacy ◽

Insurance Companies ◽

Shared Environment ◽

Physical And Mental Health ◽

Healthcare Applications

With increased usage of IT solutions, a huge volume of data is generated from different sources like social networks, CRM, and healthcare applications, to name a few. The size of the data that is generated grows exponentially. As cloud computing provides an optimized, shared, and virtualized IT infrastructure, it is better to leverage the cloud services for storing and processing such Big Data. Securing the data is one of the major challenges in all the domains. Though security and privacy have been talked about for decades, there is still a growing need for high end methods for securing the rampant growth of data. The privacy of personal data, and to be more specific the health data, continues to be an important issue worldwide. Most of the health data in today’s IT world is being computerized. A patient’s health data may portray the different attributes such as his physical and mental health, its severity, financial status, and much more. Moreover, the medical data that are collected from the patients are being shared with other stakeholders of interest like doctors, insurance companies, pharmacies, researchers, and other health care providers. Individuals raise concern about the privacy of their health data in such a shared environment.

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Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019

Yearbook of Medical Informatics ◽

10.1055/s-0040-1701987 ◽

2020 ◽

Vol 29 (01) ◽

pp. 032-043 ◽

Cited By ~ 1

Author(s):

Hannah K. Galvin ◽

Paul R. DeMuro

Keyword(s):

Access Control ◽

Data Storage ◽

Mobile Health ◽

Data Privacy ◽

Relevant Literature ◽

Personal Data ◽

Health Data ◽

Human Right ◽

Health Technologies ◽

Data Ownership

Objectives: To survey international regulatory frameworks that serve to protect privacy of personal data as a human right as well as to review the literature regarding privacy protections and data ownership in mobile health (mHealth) technologies between January 1, 2016 and June 1, 2019 in order to identify common themes. Methods: We performed a review of relevant literature available in English published between January 1, 2016 and June 1, 2019 from databases including PubMed, Google Scholar, and Web of Science, as well as relevant legislative background material. Articles out of scope (as detailed below) were eliminated. We categorized the remaining pool of articles and discrete themes were identified, specifically: concerns around data transmission and storage, including data ownership and the ability to re-identify previously de-identified data; issues with user consent (including the availability of appropriate privacy policies) and access control; and the changing culture and variable global attitudes toward privacy of health data. Results: Recent literature demonstrates that the security of mHealth data storage and transmission remains of wide concern, and aggregated data that were previously considered “de-identified” have now been demonstrated to be re-identifiable. Consumer-informed consent may be lacking with regard to mHealth applications due to the absence of a privacy policy and/or to text that is too complex and lengthy for most users to comprehend. The literature surveyed emphasizes improved access control strategies. This survey also illustrates a wide variety of global user perceptions regarding health data privacy. Conclusion: The international regulatory framework that serves to protect privacy of personal data as a human right is diverse. Given the challenges legislators face to keep up with rapidly advancing technology, we introduce the concept of a “healthcare fiduciary” to serve the best interest of data subjects in the current environment.

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Patient Perspectives on Health Data Privacy and Management: “Where Is My Data and Whose Is It?”

International Journal of Telemedicine and Applications ◽

10.1155/2018/3838747 ◽

2018 ◽

Vol 2018 ◽

pp. 1-6 ◽

Cited By ~ 1

Author(s):

Mart Wetzels ◽

Eva Broers ◽

Peter Peters ◽

Loe Feijs ◽

Jos Widdershoven ◽

...

Keyword(s):

Focus Groups ◽

Data Storage ◽

Data Privacy ◽

Patient Perspective ◽

New Technologies ◽

Data Access ◽

Health Data ◽

Medical Data ◽

Added Value ◽

Insurance Companies

New technologies are increasingly evaluated for use within the clinical practice to monitor patients’ medical and lifestyle data. This development could contribute to a more personalized approach to patient care and potentially improve health outcomes. To date, patient perspective on this development has mostly been neglected in the literature. Hence, this study aims to shed more light on the patient perspective on health data privacy and management. Focus groups with cardiac patients were done at the Elizabeth TweeSteden Ziekenhuis (ETZ) in the Netherlands as part of the DoCHANGE project. The focus groups were conducted using a semistructured protocol which was organized around three themes: privacy regulations, data storage, and transparency and privacy management. Five focus groups with a total of 23 patients were conducted. The majority of the patients preferred to have access to their medical data; however, the knowledge on who has access to data was limited. Patients indicated that they do not want to share their medical data with health insurance companies or the pharmaceutical industry. Furthermore, most patients do not see the added value of supplementing their medical dossier with lifestyle data. Current findings showed patients prefer access to and control over own data but that the knowledge concerning data privacy and management is limited. Sharing of non-medical health data (e.g.,, physical activity) was considered unnecessary. Future studies should address patient preferences and develop infrastructure which facilitates medical data access for patients.

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Patient perspectives on health data privacy and management: �Where is my data and whose is it?� (Preprint)

10.2196/preprints.10689 ◽

2018 ◽

Author(s):

Mart Wetzels ◽

Eva Broers ◽

Peter Peters ◽

Loe Feijs ◽

Jos Widdershoven ◽

...

Keyword(s):

Focus Groups ◽

Data Storage ◽

Data Privacy ◽

Patient Perspective ◽

New Technologies ◽

Data Access ◽

Health Data ◽

Medical Data ◽

Added Value ◽

Insurance Companies

UNSTRUCTURED **Background**: New technologies are increasingly evaluated for use within the clinical practice to monitor patients’ medical and lifestyle data. This development could contribute to a more personalised approach towards patient care and potentially improve health outcomes. To date, patient perspective on this development has largely been neglected in the literature. Hence, this study aims to shed more light on the patient perspective on health data privacy and management. **Methods**: Focus groups with cardiac patients were conducted at the Elizabeth Tweesteden Ziekenhuis (ETZ) in the Netherlands as part of the DoCHANGE project. The focus groups were conducted using a semi-structured protocol which was organised around three themes: privacy regulations, data storage, and transparency and privacy management. **Results**: Five focus groups with a total of 23 patients were conducted. The majority of the patients preferred to have access to their medical data however the knowledge on who has access to data was limited. Patients indicated that they do not want to share their medical data with health insurance companies or the pharmaceutical industry. Furthermore, most patients do not see the added value of supplementing their medical dossier with lifestyle data. **Discussion**: Current findings showed patients prefer access to and control over own data but that the knowledge concerning data privacy and management is limited. Sharing of non-medical health data (e.g. physical activity) was considered unnecessary. Future studies should address patient preferences and develop infrastructure which facilitates medical data access for patients.

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FOR ELECTRONIC HEALTH RECORDS IN CONTEXT FOR PROTECTION ON PERSONAL DATA

10.36997/ppdd2021.76 ◽

2021 ◽

Author(s):

Galina Yolova ◽

Keyword(s):

Electronic Health Records ◽

Data Storage ◽

Data Protection ◽

Personal Data ◽

Legal Protection ◽

Free Movement ◽

Digital Tools ◽

Health Records ◽

Personal Data Protection ◽

Electronic Health

The development analyzes the nature and principles of the use of electronic health records in the context of the data protection requirements set out in Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of individuals with regard to the processing of personal data. personal data and on the free movement of such data, and given the need for adequate mechanisms for their confidentiality in order to protect the interests and rights of patients and insured persons.The essence of electronic health records as digital tools for data storage and sharing is presented, the principles for creation, use, storage and sharing of records in the context of the principles of personal data protection are clarified, as well as summaries of the need to ensure confidentiality, adequate and effective legal protection.

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Integrating Exosomal MicroRNA and Electronic Health Data Improves Tuberculosis Diagnosis

SSRN Electronic Journal ◽

10.2139/ssrn.3247844 ◽

2018 ◽

Author(s):

Xuejiao Hu ◽

Shun Liao ◽

Hao Bai ◽

Lijuan Wu ◽

Minjin Wang ◽

...

Keyword(s):

Health Data ◽

Tuberculosis Diagnosis ◽

Electronic Health ◽

Exosomal Microrna

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CioSy: A Collaborative Blockchain-Based Insurance System

Electronics ◽

10.3390/electronics10111343 ◽

2021 ◽

Vol 10 (11) ◽

pp. 1343

Author(s):

Faiza Loukil ◽

Khouloud Boukadi ◽

Rasheed Hussain ◽

Mourad Abed

Keyword(s):

Data Storage ◽

Insurance Industry ◽

Emerging Technology ◽

Third Party ◽

Insurance Companies ◽

Smart Contracts ◽

Insurance Policy ◽

Insurance System ◽

Advanced Technologies ◽

Multiple Challenges

The insurance industry is heavily dependent on several processes executed among multiple entities, such as insurer, insured, and third-party services. The increasingly competitive environment is pushing insurance companies to use advanced technologies to address multiple challenges, namely lack of trust, lack of transparency, and economic instability. To this end, blockchain is used as an emerging technology that enables transparent and secure data storage and transmission. In this paper, we propose CioSy, a collaborative blockchain-based insurance system for monitoring and processing the insurance transactions. To the best of our knowledge, the existing approaches do not consider collaborative insurance to achieve an automated, transparent, and tamper-proof solution. CioSy aims at automating the insurance policy processing, claim handling, and payment using smart contracts. For validation purposes, an experimental prototype is developed on Ethereum blockchain. Our experimental results show that the proposed approach is both feasible and economical in terms of time and cost.

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Artificial Intelligence in Biomedicine: A Legal Insight

BioTech ◽

10.3390/biotech10030015 ◽

2021 ◽

Vol 10 (3) ◽

pp. 15

Author(s):

Takis Vidalis

Keyword(s):

Artificial Intelligence ◽

Personal Data ◽

Health Data ◽

The Self ◽

Data Handling ◽

Direct Control ◽

Eu Legislation ◽

Attending Physicians ◽

Self Learning ◽

The Eu

The involvement of artificial intelligence in biomedicine promises better support for decision-making both in conventional and research medical practice. Yet two important issues emerge in relation to personal data handling, and the influence of AI on patient/doctor relationships. The development of AI algorithms presupposes extensive processing of big data in biobanks, for which procedures of compliance with data protection need to be ensured. This article addresses this problem in the framework of the EU legislation (GDPR) and explains the legal prerequisites pertinent to various categories of health data. Furthermore, the self-learning systems of AI may affect the fulfillment of medical duties, particularly if the attending physicians rely on unsupervised applications operating beyond their direct control. The article argues that the patient informed consent prerequisite plays a key role here, not only in conventional medical acts but also in clinical research procedures.

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The funhouse mirror: the I in personalised healthcare

Life Sciences Society and Policy ◽

10.1186/s40504-020-00108-0 ◽

2021 ◽

Vol 17 (1) ◽

Author(s):

Mira W. Vegter ◽

Hub A. E. Zwart ◽

Alain J. van Gool

Keyword(s):

Precision Medicine ◽

Personal Data ◽

Health Data ◽

Personal Health ◽

Lifestyle Interventions ◽

Phenotypic Data ◽

Individual Health ◽

Data Source ◽

Tracking Devices ◽

Personalised Healthcare

AbstractPrecision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.

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