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  4. Developing a Concept on Ethical, Legal and Social Implications (ELSI) for Data Literacy in Health Professions: A Learning Objective-Based Approach
 
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2025
Journal Article
Title

Developing a Concept on Ethical, Legal and Social Implications (ELSI) for Data Literacy in Health Professions: A Learning Objective-Based Approach

Abstract
(1) Background: Data literacy is becoming increasingly important for healthcare professionals in both outpatient care and research. Since healthcare data and the possibilities for its use and misuse are increasing in these areas, healthcare professionals need diverse knowledge regarding the collection, use and evaluation of data. A core component of this is an understanding of the ethical, legal, and social implications (ELSI) of working with health data. (2) Methods: Within the DIM.RUHR project (Data Competence Center for Interprofessional use of Health Data in the Ruhr Metropolis), the challenge of training in data literacy for different healthcare professionals is addressed. Based on a learning objectives matrix for interprofessional data literacy education, an ELSI concept was developed through collaboration with interprofessional project partners. The study was conducted between December 2024 and April 2025. (3) Results: The foundational structure of the ELSI concept was based on the learning objectives matrix and an unstructured literacy search for ELSI concepts in similar contexts. Using an iterative design-based research approach, a group of experts from different fields (didactics, applied ethics, health sciences, law, sociology, informatics, and psychology) developed an ELSI concept for healthcare professionals. The following categories were identified as crucial: 1. philosophy of science: a basic understanding of science and the hurdles and opportunities; 2. ethics: an overview of the biomedical principles and a technological assessment; 3. law: an overview of the reservation of permission and self-determination; 4. social aspects: an overview of health inequalities and different forms of power relations and imbalances. (4) Conclusions: The ELSI concept can be used in the orientation of healthcare professionals in outpatient care and research—regardless of their profession—to develop data competencies, with the aim of providing a holistic view of the challenges and potential in the collection, use, and evaluation of healthcare data. The DIM.RUHR project’s approach is to develop open educational resources that build on the ELSI concept to teach specific skills at different competence levels.
Author(s)
Lüdorf, Vivian
Universität Witten/Herdecke
Meister, Sven  
Fraunhofer-Institut für Software- und Systemtechnik ISST  
Mainz, Anne
Universität Witten/Herdecke
Ehlers, Jan Peter
Universität Witten/Herdecke
Nitsche, Julia
Universität Witten/Herdecke
Busse, Theresa Sophie
Universität Witten/Herdecke
Journal
Healthcare. Online-Ressource  
Open Access
File(s)
Download (439.42 KB)
Rights
CC BY 4.0: Creative Commons Attribution
DOI
10.3390/healthcare13172108
10.24406/publica-5685
Additional link
Full text
Language
English
Fraunhofer-Institut für Software- und Systemtechnik ISST  
Keyword(s)
  • data literacy

  • digital transformation

  • ELSA

  • ELSA concept

  • ELSI

  • ELSI concept

  • ethics

  • healthcare data management

  • informed consent

  • outpatient healthcare

  • professional competencies

  • social responsibility

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