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Contextual Anonymization for Secondary Use of Big Data in Biomedical Research: Proposal for an Anonymization Matrix.

ABSTRACT: BACKGROUND:The current law on anonymization sets the same standard across all situations, which poses a problem for biomedical research. OBJECTIVE:We propose a matrix for setting different standards, which is responsive to context and public expectations. METHODS:The law and ethics applicable to anonymization were reviewed in a scoping study. Social science on public attitudes and research on technical methods of anonymization were applied to formulate a matrix. RESULTS:The matrix adjusts anonymization standards according to the sensitivity of the data and the safety of the place, people, and projects involved. CONCLUSIONS:The matrix offers a tool with context-specific standards for anonymization in data research.

SUBMITTER: Rumbold J

PROVIDER: S-EPMC6284146 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Contextual Anonymization for Secondary Use of Big Data in Biomedical Research: Proposal for an Anonymization Matrix.

Rumbold John J Pierscionek Barbara B

JMIR medical informatics 20181122 4

<h4>Background</h4>The current law on anonymization sets the same standard across all situations, which poses a problem for biomedical research.<h4>Objective</h4>We propose a matrix for setting different standards, which is responsive to context and public expectations.<h4>Methods</h4>The law and ethics applicable to anonymization were reviewed in a scoping study. Social science on public attitudes and research on technical methods of anonymization were applied to formulate a matrix.<h4>Results< ...[more]

PMID: 30467101

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Project description:BackgroundFor biomedical data-driven research purposes, secondary use of clinical data carries great but largely untapped potential. Physicians' attitudes and their needs towards secondary data use are essential to inform its practical and ethically sound implementation but are currently understudied.ObjectiveTherefore, the objectives of the study are to assess physicians' (i) general attitudes and concerns, (ii) willingness to adapt workflows and to make data available for secondary use, (iii) group-specific conditions toward implementation of secondary use and associated concerns of physician-scientists and purely clinical physicians.MethodsWe developed an online survey based on a literature review and an expert interview study. Physicians in private practice and at two large German university hospitals were surveyed from May 2021 until January 2022.ResultsIn total, 446 physicians participated in the survey. 96% [380/397] of all physicians reported a positive attitude towards secondary use; 87% [31/397] are in-principle willing to support secondary use of clinical data along with a small proportion of physicians with fundamental reservations. Secondly, the most important conditions for adapting workflows were funding of additional time and effort for research-adequate documentation (71% [286/390]) and the most important condition for providing patients' clinical data was reliable protection of patients' privacy (67% [254/382]). Thirdly, physician-scientists were more likely than purely clinical physicians to request additional funding for research-adequate documentation as a precondition for support (83% vs 69%, P = .002) and the privilege to conduct research with their own patients' clinical data before other researchers are allowed to (43% vs 11%, P < .001); while purely clinical physicians more frequently require reliable protection of patient privacy (76% vs 62%, P = .007) and monetary compensation (45% vs 25%, P < .001).ConclusionSince this study presents high in-principle willingness of physicians to support secondary use along with little general concerns, it seems essential to address physicians' group-specific conditions toward secondary use in order to gain their support.

Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

Dataset Information

Contextual Anonymization for Secondary Use of Big Data in Biomedical Research: Proposal for an Anonymization Matrix.

Publications

Contextual Anonymization for Secondary Use of Big Data in Biomedical Research: Proposal for an Anonymization Matrix.

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