Dataset Information

Mind Your Data: Privacy and Legal Matters in eHealth.

ABSTRACT: The health care sector can benefit considerably from developments in digital technology. Consequently, eHealth applications are rapidly increasing in number and sophistication. For successful development and implementation of eHealth, it is paramount to guarantee the privacy and safety of patients and their collected data. At the same time, anonymized data that are collected through eHealth could be used in the development of innovative and personalized diagnostic, prognostic, and treatment tools. To address the needs of researchers, health care providers, and eHealth developers for more information and practical tools to handle privacy and legal matters in eHealth, the Dutch national Digital Society Research Programme organized the "Mind Your Data: Privacy and Legal Matters in eHealth" conference. In this paper, we share the key take home messages from the conference based on the following five tradeoffs: (1) privacy versus independence, (2) informed consent versus convenience, (3) clinical research versus clinical routine data, (4) responsibility and standardization, and (5) privacy versus solidarity.

SUBMITTER: Zegers CML

PROVIDER: S-EPMC8075039 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature

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Mind Your Data: Privacy and Legal Matters in eHealth.

Zegers Catharina M L CML Witteveen Annemieke A Schulte Mieke H J MHJ Henrich Julia F JF Vermeij Anouk A Klever Brigit B Dekker Andre A

JMIR formative research 20210317 3

The health care sector can benefit considerably from developments in digital technology. Consequently, eHealth applications are rapidly increasing in number and sophistication. For successful development and implementation of eHealth, it is paramount to guarantee the privacy and safety of patients and their collected data. At the same time, anonymized data that are collected through eHealth could be used in the development of innovative and personalized diagnostic, prognostic, and treatment tool ...[more]

PMID: 33729163

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Project description:Increasingly, hospitals and research institutes are developing technical solutions for sharing patient data in a privacy preserving manner. Two of these technical solutions are homomorphic encryption and distributed ledger technology. Homomorphic encryption allows computations to be performed on data without this data ever being decrypted. Therefore, homomorphic encryption represents a potential solution for conducting feasibility studies on cohorts of sensitive patient data stored in distributed locations. Distributed ledger technology provides a permanent record on all transfers and processing of patient data, allowing data custodians to audit access. A significant portion of the current literature has examined how these technologies might comply with data protection and research ethics frameworks. In the Swiss context, these instruments include the Federal Act on Data Protection and the Human Research Act. There are also institutional frameworks that govern the processing of health related and genetic data at different universities and hospitals. Given Switzerland's geographical proximity to European Union (EU) member states, the General Data Protection Regulation (GDPR) may impose additional obligations. To conduct this assessment, we carried out a series of qualitative interviews with key stakeholders at Swiss hospitals and research institutions. These included legal and clinical data management staff, as well as clinical and research ethics experts. These interviews were carried out with two series of vignettes that focused on data discovery using homomorphic encryption and data erasure from a distributed ledger platform. For our first set of vignettes, interviewees were prepared to allow data discovery requests if patients had provided general consent or ethics committee approval, depending on the types of data made available. Our interviewees highlighted the importance of protecting against the risk of reidentification given different types of data. For our second set, there was disagreement amongst interviewees on whether they would delete patient data locally, or delete data linked to a ledger with cryptographic hashes. Our interviewees were also willing to delete data locally or on the ledger, subject to local legislation. Our findings can help guide the deployment of these technologies, as well as determine ethics and legal requirements for such technologies.

Dataset Information

Mind Your Data: Privacy and Legal Matters in eHealth.

Publications

Mind Your Data: Privacy and Legal Matters in eHealth.

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