Refreshed academic viewpoint on patient data ownership in digital health context

Abstract

Abstract Background Digital health involves generating and communicating large sensitive patient data sets. There is significant potential in its applications, but also some impediments. Our previous study showed that ownership of patient data is a problem in digital health context, not fully understood and often neglected. However, in the last two years, increased attention to this issue is observed and we aim to find if the medical academic community changed its viewpoint on patient data ownership in the context of digital health. Methods Our previous study (2014-2020) identified 27 relevant to the problem articles. A comprehensive search of PubMed, ScienceDirect and Scopus, performed between January 2021 and April 2023, identified 21 appropriate full-text publications focused on patient data ownership (problem) in digital health (context). Research questions included scientific area of publication, perception and aspects of ownership, possible solutions. Results The publications are in medical and public health (43%), digital health and medical informatics (29%), technical (19%), law and ethics (9%) journals; 71% with impact factor; authored by 38% EU, 24% USA, 9% UK, 9% Brazilian academicians. The majority (86%) are in the area of medical research - access, control, patient data sharing and use, secondary and passive data use, registries, AI, wearables, sensors; ethical challenges to digital health; 90% still perceive ownership as a challenge, arising in relation to medical research and data generated from the IoT, wearables, sensors, apps and social media. All publications discuss ownership in ethical and legal aspects and find the solution in proper legislation. Conclusions Digital health with its huge amounts of generated data brings forward the overlooked issue of patient data ownership as a challenge to medical research. Academic attention is rising, and addressing this challenge requires the combined efforts of all stakeholders for suitable amendments in the legislation. Key messages • Ownership of patient data in the context of digital health is a problem, especially for medical research, that should not be neglected and needs a comprehensive attitude from all stakeholders. • Proper legislation concerning patient data ownership may help in improving international academic medical and public health research, healthcare services, and the health of the population as a whole.