3.149 Digital legacy and palliative care: collaboration with design and technology stakeholders to conduct end-of-life care research

Nwosu, Amara, Norris, James, Taubert, Mark ORCID: https://orcid.org/0000-0003-0454-5609, Tibbles, Andrew, Nickpour, Farnaz and Stanley, Sarah 2024. 3.149 Digital legacy and palliative care: collaboration with design and technology stakeholders to conduct end-of-life care research. Presented at: The 13th World Research Congress of the European Association for Palliative Care, Barcelona, Spain, 16 – 18 May 2024. EAPC Abstracts: Palliative Medicine. , vol.38 (S1) SAGE, p. 174. 10.1177/02692163241242338

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Abstract

Background/aims: Research, using design and digital methods, can potentially help patients and caregivers to manage their digital legacy (the digital information available about someone following their death). However, there is a lack of multi-disciplinary partnerships needed to conduct digital legacy research in palliative care. Multidisciplinary partnerships involving design, digital and palliative care stakeholders can potentially improve the conduct of digital legacy research to improve outcomes for patients, caregivers and wider society. We aimed to develop a multidisciplinary digital legacy design network (compromising of palliative care, digital and design stakeholders) to work collaboratively to improve the capacity to conduct digital legacy research. Methods: This study is funded by the National Institute for Health and Care Research (NIHR), North West Coast Clinical Research Network. Over 12 months, we will conduct several engagement activities to facilitate connection with stakeholders (e.g., palliative care, digital and design stakeholders). Planned activities include two face-to-face conferences and regular online meetings. Stakeholders will work collaboratively across the following work-packages: (1) role of new technologies in digital legacy, (2) role of design in digital legacy, and (3) inequalities and inequity in digital legacy. Results: The inaugural Digital Legacy, Design and Technology networking event was attended by a multidisciplinary audience in Liverpool, UK in September 2023. The event involved presentations and workshops on the topic of digital legacy. Workshop data were collected from attendees to inform views, needs assessments and solutions. Conclusions: Following the success of this network, we have scheduled a second event for March 2024, which will use the established network to harness further data and develop a digital legacy research funding application to facilitate future work.

Item Type:	Conference or Workshop Item (Poster)
Date Type:	Published Online
Status:	Published
Schools:	Medicine
Publisher:	SAGE
Date of Acceptance:	February 2024
Last Modified:	14 Jun 2024 16:00
URI:	https://orca.cardiff.ac.uk/id/eprint/169047

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