Risks and Benefits of Sharing Patient Information on Social Media: A Digital Dilemma

Robert M A van der Boon, A. J. Camm, C. Aguiar, E. Biassin, G. Breithardt, H. Bueno, I. Drossart, N. Hoppe, E. Kamenjasevic, R. Ladeiras-Lopes, P. McrGreavy, P. Lanzer, R. Vidal-Perez, N. Bruining
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Abstract

Social media (SoMe) has witnessed remarkable growth and emerged as a dominant method of communication worldwide. Platforms such as Facebook, X (formerly Twitter), LinkedIn, Instagram, TikTok, and YouTube have become important tools of the digital native generation. In the field of medicine, particularly cardiology, attitudes towards SoMe have shifted, and professionals increasingly utilize it to share scientific findings, network with experts, and enhance teaching and learning. Notably, SoMe is being leveraged for teaching purposes, including the sharing of challenging and intriguing cases. However, sharing patient data, including photos or images, online carries significant implications and risks, potentially compromising individual privacy both online and offline. Privacy and data protection are fundamental rights within European Union (EU) treaties, and the General Data Protection Regulation (GDPR) serves as the cornerstone of data protection legislation. The GDPR outlines crucial requirements, such as obtaining “consent” and implementing “anonymization”, that must be met before sharing sensitive and patient-identifiable information. Additionally, it is vital to consider the patient perspective and prioritize ethical and social considerations when addressing challenges associated with sharing patient information on SoMe platforms. Given the absence of a peer review process and clear guidelines, we present an initial approach, a code of conduct, and recommendations for the ethical use of SoMe. In conclusion, this comprehensive review underscores the importance of a balanced approach that ensures patient privacy and upholds ethical standards while harnessing the immense potential of SoMe to advance cardiology practice and facilitate knowledge dissemination.
在社交媒体上共享患者信息的风险和益处:数字困境
社交媒体(SoMe)发展迅猛,已成为世界范围内的主要交流方式。Facebook、X(前 Twitter)、LinkedIn、Instagram、TikTok 和 YouTube 等平台已成为数字原生一代的重要工具。在医学领域,尤其是心脏病学领域,人们对 SoMe 的态度发生了转变,专业人士越来越多地利用它来分享科研成果、与专家建立联系,以及加强教学和学习。值得注意的是,SoMe 正被用于教学目的,包括分享具有挑战性和引人入胜的病例。然而,在网上共享患者数据(包括照片或图像)会带来重大影响和风险,可能会在网上和网下损害个人隐私。隐私和数据保护是欧盟(EU)条约规定的基本权利,而《通用数据保护条例》(GDPR)则是数据保护立法的基石。GDPR 概述了在共享敏感信息和可识别患者身份的信息之前必须满足的关键要求,如获得 "同意 "和实施 "匿名化"。此外,在应对与 SoMe 平台共享患者信息相关的挑战时,必须从患者的角度出发,优先考虑伦理和社会因素。鉴于缺乏同行评审程序和明确的指导原则,我们提出了一种初步方法、行为准则以及关于 SoMe 道德使用的建议。总之,这篇综合评论强调了平衡方法的重要性,即在利用 SoMe 的巨大潜力推动心脏病学实践和促进知识传播的同时,确保患者隐私并坚持道德标准。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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