Risks and benefits of sharing patient information on social media: a digital dilemma

Author:

van der Boon Robert M A1,Camm A John2,Aguiar C3,Biasin E4,Breithardt G5,Bueno H6789,Drossart I1011,Hoppe N12,Kamenjasevic E4,Ladeiras-Lopes R1314,McGreavy Paul10ORCID,Lanzer P15,Vidal-Perez R1617,Bruining Nico1ORCID

Affiliation:

1. Erasmus Medical Center, Cardiovascular Institute, Department of Cardiology , Rotterdam , The Netherlands

2. Genetic and Cardiovascular Sciences Institute, Cardiology Clinical Academic Group, St. Geroge’s University of London, Cranmer Terrace , London, SW17 0RE , UK

3. Department of Cardiology, Hospital Santa Cruz, Centro Hospitalar Lisboa Ocidental, Av. Prof. Dr. Reinaldo dos Santos, 2790-134 Carnaxide, Lisbon , Portugal

4. Centre for IT & IP Law (CiTiP), KU Leuven , Sint-Michielsstraat 6 box 3443, MTC-Building, 3rd floor, room 03.03,3000 Leuven , Belgium

5. Department of Cardiology II (Electrophysiology), University Hospital Münster , Germany

6. Centro Nacional de Investigaciones Cardiovasculares (CNIC), Melchor Fernández Almagro , 328029 Madrid , Spain

7. Cardiology Department, Hospital Universitario 12 de Octubre and Instituto de Investigación Sanitaria Hospital 12 de Octubre (imas12) , Madrid , Spain

8. Centro de Investigación Biomédica en Red Enfermedades Cardiovaculares (CIBERCV) , Madrid , Spain

9. Facultad de Medicina, Universidad Complutense de Madrid , Madrid , Spain

10. European Society of Cardiology Patient Forum, The European Heart House, Les Templiers, 2035 Route des Colles, CS 80179 Biot, 06903 Sophia Antipolis , France

11. European Society of Cardiology, The European Heart House , Les Templiers, 2035 Route des Colles, CS 80179 Biot., 06903 Sophia Antipolis , France

12. CELLS—Centre for Ethics and Law in the Life Sciences, Leibniz University Hannover , Otto-Brenner-Straße 1, 30159 Hannover , Germany

13. UpHill Health, SA, Portugal

14. Department of Surgery and Physiology, Faculty of Medicine of the University of Porto , Alameda Prof. Hernâni Monteiro, 4200-319 Porto , Portugal

15. Internal Medicine, Middle German Heart Center , Friedrich-Ludwig-Jahn Strasse 2, Bitterfeld D-06749 , Germany

16. Servicio de Cardiología, Unidad de Imagen y Función Cardíaca , Complexo Hospitalario Universitario A, A Coruña 15006 , Spain

17. Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares (CIBERCV) , Madrid , Spain

Abstract

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 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’s 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.

Funder

European Society of Cardiology

Publisher

Oxford University Press (OUP)

Reference35 articles.

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