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 exist that are required to adequately 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. 

Dr Amara Nwosu will provide information about a UK National Institute for Health and Care Research (NIHR) project 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. 

About Amara Nwosu

Dr Nwosu is a Senior Clinical Lecturer in Palliative Care at Lancaster Medical School. Dr Nwosu is also the research lead for Research lead (Marie Curie Hospice Liverpool) and a former Research Scholar for the (National Institute for Health Research (NIHR) North West Coast Clinical Research Network (CRN)). Clinically, Dr Nwosu works as an Honorary Consultant in Palliative Care at the Royal Liverpool University Hospitals NHS Foundation Trust. 

Dr Nwosu’s PhD project involved the use of bioelectrical impedance analysis (BIA) to evaluate hydration in advanced cancer. For this work, he was awarded the 2014 Twycross Research prize of the Association of Palliative Medicine and received joint 3rd place for the Early Researcher Award of the European Association of Palliative Care (EAPC). He also won the National Cancer Research Institute (NCRI) conference prize on two occasions (2012 and 2014).  

Dr Nwosu’s research interests include:

• the evaluation of technology to support care for patients with advanced disease and
• the use of clinically assisted hydration to manage symptoms.

Dr Nwosu is the podcast Editor for the ‘Palliative Medicine’ journal (SAGE Publications). In 2020 Dr Nwosu was awarded the Churchill Fellowship, through which he will research how digital health technology can improve palliative care, in the Netherlands and the USA.  

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• Digital Legacy Association appointed as an ‘Observer’ for the European Law Institute – Digital Assets Project
• Speaker & abstract announcement: Stephanie Owens

Maneesh Juneja, Digital Health Futurist

Technology and those that create it are able to wield more power every day. The quest for greater efficiencies is promising us a brilliant future, where our needs, wants and even our emotional states are predicted, to enable personalised goods and services that arrive just in time. If algorithms could one day predict the onset of certain diseases, could they one day also predict when we are likely to die, and arrange the necessary interventions?

As more data about us is generated, captured and shared, in order to power artificial intelligence, can we really automate things like empathy and compassion, in the context of death? Today, children are growing up perceiving virtual assistants as friends and sometimes trusting a machine more than a human. Who (or what) will future generations turn to for support when it comes to bereavement? Humans, robots or a combination of both?

What does this shift mean for the services of tomorrow, and for those that work in areas such as Palliative Care? The pandemic has already catalysed changes across society, which have influenced not only how we behave, but how we relate to ourselves and each other.

The future looks uncertain in many respects, but there could be ways in which we can work together to not only navigate the uncertainty, but to ensure the future is a desirable one.

This keynote will take us on a journey towards 2040, to explore how emerging technology could create an even larger impact on dying, death and digital legacies, and what this means for our choices today as we work towards building a better tomorrow, for everyone.

Speaker Bio

Maneesh Juneja is a Digital Health Futurist who explores the convergence of emerging technologies to see how they can make the world a healthier and happier place. He looks at these technologies in the context of socio-cultural, political and economic trends, helping organisations around the world to think differently about the future.

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch

Dr Erica Witkamp , Rotterdam University, Rob Bruntink, Journalist, Owner of Bureau MORBidee and Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center

People increasingly do not only live their physical life but also have a digital life. They store parts of their life on electronic devices, like photos and documents, and expand their life to the internet and social media. Besides, more and more people create one of more new digital personalities, like an avatar in games. What will happen to these digital aspects of human lives when physical lives come to an end? And how will either the loss or the use of valuable digital data affect the bereaved relatives?

Talking about digital legacy and digital death is still in its infancy. In the Netherlands we started our research on this topic in 2019. We are involved in several projects:

1. “The Death Lab” (In Dutch: “De Dooie Hoek”) at Lowlands Festival, a yearly three-days music and art festival with about 60.000 visitors. We asked more than 500 visitors to complete a questionnaire on their attitudes towards and preferences for their digital legacy.

2. Subsequently some students studied attitudes and preferences of healthy people for their digital legacy.

3. On a small scale we investigated among nurses and nurse students their attitudes towards the role of nurses to support patients at the end of life to prepare for their digital legacy.

4. Together with a filmmaker and medical students, we developed series of short films where older participants with a limited life expectancy look back at their lives and share valuable lessons and insights with their family members.

In all projects one theme really emerged: the lack of awareness. The various participants indicated that they had hardly ever thought about what will happen to their traces on the internet once they died. In healthcare the participants believed the arrangement of digital legacy is one’s own responsibility. Therefore we developed three short videos to evoke awareness, both in the general public and among professionals. The videos turned out to support the discussion about the topic with citizens as well as with nurse students in focus groups.

But we have to speed up! Concomitant with rapidly growing opportunities to (infinitely?) continue life after death the concerns are growing too; concerns over dealing with this new dimension of palliative care, it’s value for bereaved relatives and the many ethical and practical challenges; concerns for our societies, for patients and families, for healthcare professionals and for researchers. Who cares?

Author biographies

Dr. , Professor Care for Family Caregiving, Faculty of Nursing and Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.

Rob Bruntink, Journalist, Owner of Bureau MORBidee, The Netherlands.

Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center, The Netherlands Judith Rietjens. 

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch