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P-86 Digital legacy and palliative care: using technology, design and healthcare partnerships to research how digital information is managed after death
  1. Amara Nwosu1,2,3,
  2. Sarah Stanley3,
  3. James Norris4 and
  4. Mark Taubert5,6
  1. 1Lancaster Medical School, Lancaster University, Lancaster, UK
  2. 2Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK
  3. 3Marie Curie Hospice Liverpool, Liverpool, UK
  4. 4Digital Legacy Association, Northwood, UK
  5. 5Velindre Cancer Centre, Cardiff, UK
  6. 6Cardiff University, Cardiff, UK


Background 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 – Coop, Marlow. Palliat Med. 2019;33(1):114–15). However, there is a lack of multi-disciplinary partnerships needed to conduct digital legacy research in palliative care (Nwosu, McGlinchey, Sanders, et al. JMIR Aging. 2022; 5(1):e32075; Nwosu, Collins, Mason. Palliat Med. 2018; 32(1):164–66). 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 (DeSanto-Madeya, Tjia, Fitch, et al. Am J Hosp Palliat Med. 2020; 1049909120971569).

Aim 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 a number of 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/anticipated outputs NIHR Funding has been secured and planning is in progress. Anticipated outputs include: (1) closer collaborative working of multidisciplinary stakeholders, leading to innovation, co-creation and generation of mutually beneficial outcomes for patients, staff and services, and (2) development of research funded studies, originating from the work-packages, to provide evidence for how patients, caregivers and wider society can be supported to manage their digital legacy.

Conclusion Our vision is that this activity will develop a model that can be translated to other settings, which will demonstrate how multidisciplinary stakeholders can work collaboratively, to improve delivery of digital legacy palliative care research.

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