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◇ medRxiv2026-08-10· palliative medicine

Development of an interdisciplinary network to improve the capacity to conduct digital legacy research: a quality improvement initiative

A. C. Nwosu, A. Tibbles, C. Goodwin, L. Kaye, S. Stanley

原始摘要(英文原文)· Original abstract
BackgroundDigital legacy (the digital information available about someone following their death) has increasing societal importance as personal assets and interactions become increasingly digitized. Healthcare professionals often have a limited understanding of how to address digital legacy in practice, and there is a lack of interdisciplinary networks to improve education, research, and professional development in digital legacy. ObjectiveThis paper describes the development of an interdisciplinary initiative designed to build research capacity and develop consensus-based recommendations for integrating digital legacy into palliative care. MethodOver 12-months, we conducted interdisciplinary engagement activities with diverse stakeholders, including clinicians, designers, and sociologists. We used a modified World Cafe method to facilitate dialogue and capture feedback on how memories are digitally curated, the management of digital estates, and intergenerational perspectives on digital legacy. ResultsWe identified eight core recommendations for research and policy, including promoting digital legacy education, supporting policy development, and broadening the scope of interdisciplinary research. Our discussions highlighted the complexity of modern digital estates and the need for legal and ethical frameworks to protect individual rights. ConclusionsThe Network demonstrates that interdisciplinary collaboratives can address important issues relating to digital legacy, which provides a foundation to conduct collaborative research that improves the management of digital legacies in society.
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