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Ethical issues in biomedical research using electronic health records: a systematic review

Digitization of a health record changes its accessibility. An electronic health record (EHR) can be accessed by multiple authorized users. Health information from EHRs contributes to learning healthcare systems’ development. The objective of this systematic review is to answer a question: What are e...

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Autores principales: Piasecki, Jan, Walkiewicz-Żarek, Ewa, Figas-Skrzypulec, Justyna, Kordecka, Anna, Dranseika, Vilius
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Netherlands 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8214390/
https://www.ncbi.nlm.nih.gov/pubmed/34146228
http://dx.doi.org/10.1007/s11019-021-10031-6
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author Piasecki, Jan
Walkiewicz-Żarek, Ewa
Figas-Skrzypulec, Justyna
Kordecka, Anna
Dranseika, Vilius
author_facet Piasecki, Jan
Walkiewicz-Żarek, Ewa
Figas-Skrzypulec, Justyna
Kordecka, Anna
Dranseika, Vilius
author_sort Piasecki, Jan
collection PubMed
description Digitization of a health record changes its accessibility. An electronic health record (EHR) can be accessed by multiple authorized users. Health information from EHRs contributes to learning healthcare systems’ development. The objective of this systematic review is to answer a question: What are ethical issues concerning research using EHRs in the literature? We searched Medline Ovid, Embase and Scopus for publications concerning ethical issues of research use of EHRs. We employed the constant comparative method to retrieve common ethical themes. We descriptively summarized empirical studies. The study reveals the breadth, depth, and complexity of ethical problems associated with research use of EHRs. The central ethical question that emerges from the review is how to manage access to EHRs. Managing accessibility consists of interconnected and overlapping issues: streamlining research access to EHRs, minimizing risk, engaging and educating patients, as well as ensuring trustworthy governance of EHR data. Most of the ethical problems concerning EHR-based research arise from rapid cultural change. The framing of concepts of privacy, as well as individual and public dimensions of beneficence, are changing. We are currently living in the middle of this transition period. Human emotions and mental habits, as well as laws, are lagging behind technological developments. In the medical tradition, individual patient’s health has always been in the center. Transformation of healthcare care, its digitalization, seems to have some impacts on our perspective of health care ethics, research ethics and public health ethics. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11019-021-10031-6.
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spelling pubmed-82143902021-06-21 Ethical issues in biomedical research using electronic health records: a systematic review Piasecki, Jan Walkiewicz-Żarek, Ewa Figas-Skrzypulec, Justyna Kordecka, Anna Dranseika, Vilius Med Health Care Philos Scientific Contribution Digitization of a health record changes its accessibility. An electronic health record (EHR) can be accessed by multiple authorized users. Health information from EHRs contributes to learning healthcare systems’ development. The objective of this systematic review is to answer a question: What are ethical issues concerning research using EHRs in the literature? We searched Medline Ovid, Embase and Scopus for publications concerning ethical issues of research use of EHRs. We employed the constant comparative method to retrieve common ethical themes. We descriptively summarized empirical studies. The study reveals the breadth, depth, and complexity of ethical problems associated with research use of EHRs. The central ethical question that emerges from the review is how to manage access to EHRs. Managing accessibility consists of interconnected and overlapping issues: streamlining research access to EHRs, minimizing risk, engaging and educating patients, as well as ensuring trustworthy governance of EHR data. Most of the ethical problems concerning EHR-based research arise from rapid cultural change. The framing of concepts of privacy, as well as individual and public dimensions of beneficence, are changing. We are currently living in the middle of this transition period. Human emotions and mental habits, as well as laws, are lagging behind technological developments. In the medical tradition, individual patient’s health has always been in the center. Transformation of healthcare care, its digitalization, seems to have some impacts on our perspective of health care ethics, research ethics and public health ethics. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11019-021-10031-6. Springer Netherlands 2021-06-19 2021 /pmc/articles/PMC8214390/ /pubmed/34146228 http://dx.doi.org/10.1007/s11019-021-10031-6 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Scientific Contribution
Piasecki, Jan
Walkiewicz-Żarek, Ewa
Figas-Skrzypulec, Justyna
Kordecka, Anna
Dranseika, Vilius
Ethical issues in biomedical research using electronic health records: a systematic review
title Ethical issues in biomedical research using electronic health records: a systematic review
title_full Ethical issues in biomedical research using electronic health records: a systematic review
title_fullStr Ethical issues in biomedical research using electronic health records: a systematic review
title_full_unstemmed Ethical issues in biomedical research using electronic health records: a systematic review
title_short Ethical issues in biomedical research using electronic health records: a systematic review
title_sort ethical issues in biomedical research using electronic health records: a systematic review
topic Scientific Contribution
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8214390/
https://www.ncbi.nlm.nih.gov/pubmed/34146228
http://dx.doi.org/10.1007/s11019-021-10031-6
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