The Digital Death Survey 2024  is being conducted by James Norris of the Digital Legacy Association (UK) in conjunction with Dr. Carla Sofka at Siena College (USA).

Take the survey by clicking here

Making plans for our online lives in advance can help ensure that the important sentimental photos and videos are not lost or made inaccessible upon death. This can help reduce the likelihood of friends and family members experiencing ‘secondary loss’ when content is no longer available”. – James Norris

Complete the Digital Death Survey 2024

We encourage everyone who uses the internet and connected devices to complete the Digital Death Survey 2024. This year’s survey has been designed to educate the participant and evoke thought throughout. We further encourage the sharing of this survey through both personal social media channels and through blog posts and social media channels associated with the organisations, charities and professional associations that participants are associated with.

If you would like to receive early access to the data and insights obtained from the Digital Death Survey please add your email address at the end of the survey. Data obtained will be made publicly available (open access) in 2025.

The Digital Death Survey 2024 can be viewed and completed by clicking the following link https://qualtricsxm8hsdjxfxn.qualtrics.com/jfe/form/SV_7P5ijqn6R4SHJ8a  

Further information

The Digital Death Survey has been reviewed and approved by Siena College’s Institutional Review Board (IRB). The IRB ensures the protection of human participants in a research study. Any USA organisation that receives federal funding to conduct research with human participants is required to establish an IRB and to review and approve studies prior to collection of research data. The IRB confirmation document reference number is #IRB-FY25-22

About the authors

The Digital Legacy Association is the professional body raising awareness and improving areas relating to digital assets planning and digital legacy safeguarding. It is led by James Norris, an end of life technologist and thought leader in areas relating to end of life, digital legacy and technology.

Siena College is a learning community advancing the ideals of a liberal arts education.The Social Work department is led by Professor Carla Sofka, a published author and thought leader in areas relating to death, bereavement and the internet.

• Digital Death Survey Images
• Press Release access (Google Docs

• ‘Understanding the use of digital technologies in public health palliative care.’ – Dr Jason Mills, Flnders Universty and Shlya Mills, Adjunct Associate Professor, Palliative Care South Australia http://DigitalLegacyConference.com/public-health-palliative-care
• ‘Governance of the Digital Afterlife’. – Khadiza Laskor, University of Bristol’s Cyber Security Centre for Doctoral Training Programme https://digitallegacyconference.com/digital-afterlife-governance/
• ‘Navigating digital remains: Ethical challenges and cultural perspectives from Japan’. – Professor Akiko Orita, Kanto Gakuin University https://digitallegacyconference.com/digital-remains-japan/

The second wave of abstracts will be announced in the next two weeks. The final programme will published on the Digital Legacy Conference website and on the Public Health Palliative Care International Conference (PHPCI) website once all of the abstracts have been announced.

The Digital Legacy Association have been appointed as an ‘observer’ for the European Law Institute’s ‘Model Rules on Succession of Digital Assets, Data and other Digital Remains’ programme. 

Other observers for this program are from The European Commission, STEP, Uniform Law Commission, Uniform Law Conference of Canada (ULCC) and The. Council of the Notariats of the European Union (CNUE).

We look forward to starting work on this project in May 2024.

About

Succession of Digital Assets, Data and other Digital Remains are increasingly important considerations in succession, estate planning and estate litigation, as more people conduct their lives online and accumulate valuable digital assets, accounts and data. Legal professionals report issues in dealing with these cases and advise their clients in the estate planning process. Technology companies also report a lack of clarity when it comes to accessing accounts and data on their services. A growing number of business models aim to exploit the lack of rules in this area and offer technological solutions (eg digital estate planning tools, chatbots, password managers, etc), often with the risk of legally inefficient outcomes, resulting in legal uncertainty. Citizens in the EU struggle to navigate complex terms of service, both when attempting to plan their own estate distribution and when trying to access and manage the estate of their deceased family members and friends. Given the ever-increasing volume and value of digital legacy, as well as the conflicts and issues mentioned, there is a pressing need to regulate and legislate this vital area that intersects numerous areas of law (succession law, property, contract, IP, data protection, jurisdiction, personality rights, criminal law, etc).  

Aims

The project aims at drafting model law/rules to harmonise key provisions on the definition of digital remains, access and inheritability, and data protection issues. The project will help define and distinguish different types of assets, remains and personal data, define their inheritability and transmission, as well as examine existing rules on applicable law, jurisdiction, data protection and other relevant areas of law, with a view to ascertaining their suitability for this field, failing which proposals may be put forward.  Key target audiences include: EU and Member State legislators and governments, courts, legal professionals, technology companies and service providers, professional associations, civil society, and citizens.

Outcome

The main outcome of this project will be model Law/rules (and principles, for issues/areas where a model law is not suitable) aimed at influencing European legislation on the definition, scope, entitlement and access to the digital assets and data of a deceased person. These provisions would, if legislated, prevail over the contractual agreement between service providers and the deceased and harmonise the data protection standards in this field.

Stephanie’s presentation will look at the emotional impact of the loss, or potential loss, of deleting someone who has died from social media. Most people now have online lives and online friends or family, but what happens when these friends or family die? For some, this is a way of remembering someone who has died and can be helpful in feeling that connection when it may be the only one. For others, the memory or reminders may be too painful. There have been some cases where conversations or photos have been lost due to the platform removing them, causing upset to those left behind. There is also digital “death tourism”, such as seeking out the social media of celebrities or mutual friends that have died. Whereas people don’t know these people directly, they feel it is a way of showing respect or having that connection in a community and understanding of what may have happened.

These “digital graveyards” are set to increase over the years and so it is important that we understand how this may look and what impact it can have on people.

The aim of this presentation is not only to encourage people to think about whether they would delete someone from their social media in the event of their death or whether they would keep the memory, but to get them to think about what they want to happen to their own social media after their death.

About Stephanie Owens

Stephanie Owens is passionate about social change and all things death and dying, having worked in the end of life sector for several years. Her specialist interests include acceptance and understanding of neurodivergent grief and attitudes towards death, and grieving for animals. She is currently a volunteer for Project Eileen which helps young people cope with death and provides resources to schools on death and bereavement.

Recent News

• Digital Death Survey – Launches today
• Digital Legacy Conference 2024 – Full Agenda
• First wave of speaker announcements
• Digital Legacy Association appointed as an ‘Observer’ for the European Law Institute – Digital Assets Project
• Speaker & abstract announcement: Stephanie Owens

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.  

Latest News

• Digital Death Survey – Launches today
• Digital Legacy Conference 2024 – Full Agenda
• First wave of speaker announcements
• Digital Legacy Association appointed as an ‘Observer’ for the European Law Institute – Digital Assets Project
• Speaker & abstract announcement: Stephanie Owens

In his talk, Prof. Mark Taubert will outline hospital and hospice experiences with patients, significant others, researchers and fellow healthcare professionals who have delved into digital legacy planning. The taboo around death and dying is starting to crumble in some areas, more than others. People working in, or receiving palliative care, can influence and inform the sometimes fevered debate. Mark will outline narratives from wards and clinics, where people have asked him questions about what they should do with digital content when faced with the end of their lives or in bereavement. From patients who have created video content for their families to view on specific dates in the future, to the ‘problem’ of widowhood on Facebook. For the latter thematic, he was interviewed by CNN in 2022, a time when Meta was receiving a lot of complaints with regards to this issue and its stance on relationship status. Patient and family journeys have at times been very challenging and hard, but digital solutions have helped with legacy creation, learning and planning.

About Professor Mark Taubert

Mark is a palliative medicine hospital consultant and clinical director at Velindre University NHS Trust in Wales. His teaching/research activities at Cardiff University include advance care planning, acute palliative care, technology & new media and DNACPR decision making.

He is the founder of TalkCPR.com and has a national lead role to improve public understanding on topics relevant to care in the last years of life and at the extreme ends of medicine. He has delivered a Ted Talk on subtleties in language that are relevant to modern healthcare delivery, and writes for international news outlets like the Washington Post, where his article was an editorial top pick of the year.–

Using virtual calling during COVID-19 enabling patient “goodbyes”

A snipper of Mark speaking at the Digital Legacy Conference 2021 can be watched below

Latest news from the Digital Legacy Conference

• Digital Death Survey – Launches today
• Digital Legacy Conference 2024 – Full Agenda
• First wave of speaker announcements
• Digital Legacy Association appointed as an ‘Observer’ for the European Law Institute – Digital Assets Project
• Speaker & abstract announcement: Stephanie Owens

Sarah Stanley, Research nurse in Marie Curie Hospice Liverpool (bio)

Background

The need for palliative care is increasing [1] and it is essential to look at how emerging technologies
can improve care for palliative patients and their carers in the future [2]. With an increasing use of
personal technology, many people are spending time creating their own online content [3]. This
online content is often described as a digital legacy, the digital information that is available about
someone following their death [4]. There is limited evidence around the experiences of digital legacy
amongst palliative care healthcare professionals and the benefits of supporting patients in managing
their digital legacy.

Aim

This constructivist grounded theory study aims to identify palliative care healthcare
professionals experiences of supporting palliative patients in managing digital legacy as part
of advance care planning discussions.

Method

Semi-structured interviews were conducted with ten (n=10) palliative care healthcare
professionals working in a hospice in the North West of England. Interviews were recorded
and transcribed and data was analysed using NVIVO.

Findings

Four theoretical categories emerged from the data describing why palliative care healthcare
professionals view digital legacy as an important topic. These four categories; ‘accessing
digital legacy’, ‘becoming part of advance care planning’, ‘impacting grief and bereavement’
and ‘raising awareness of digital legacy’ were found to revolve around a core category
‘understanding the impact of digital legacy’. Digital assets, with both monetary and
sentimental value, were viewed as being equally as important as physical assets and should
be considered as part of advance care planning conversations.

Conclusions

The emerging theory ‘understanding the impact of digital legacy’ offers an insight into the
knowledge and experiences of healthcare professionals working in a palliative care setting.
Further work is needed to explore palliative patients and their carers’ views on digital legacy
and how they can be supported to manage this better in the future.

1. World Health Organisation. (2020) [online]
   Available at: https://www.who.int/news-room/fact-sheets/detail/palliative-care
   [Accessed: 07.04.21]
2. Nwosu, A.C., Collins, B. and Mason, S. (2018) Big Data analysis to improve care for people living
   with serious illness: The potential to use new emerging technology in palliative care. Palliat Med, 32
   (1), 164-166.
3. Office for National Statistics. (2020) [online]
   Available at:
   https://www.ons.gov.uk/peoplepopulationandcommunity/householdcharacteristics/homeinterneta
   ndsocialmediausage/bulletins/internetaccesshouseholdsandindividuals/2020
4. Digital Legacy Association. (2021) [online]
   Available at: https://digitallegacyassociation.org/
   [Accessed: 07.04.2021]

Latest Digital Legacy Conference News

• Digital Death Survey – Launches today
• Digital Legacy Conference 2024 – Full Agenda
• First wave of speaker announcements
• Digital Legacy Association appointed as an ‘Observer’ for the European Law Institute – Digital Assets Project
• Speaker & abstract announcement: Stephanie Owens

The Digital Legacy Conference will return as a face to face event this year and will be delivered during the 18th European Association of Palliative Care World Congress (EAPC2023).

Digital Legacy Conference 2023 (DLC2023) attendees will learn about emerging best practices in areas relating to digital assets planning and digital legacy safeguarding. The event will cater for 148 people and is free to attend for all EAPC badgeholders. 

The conference will take place on Saturday 17th June in the Van Cappellen Zaal room. Doors will open at 8:30am, the conference will start at 9am and conclude at 12pm.

Why this conference is important

Modern day, communication technologies are changing the world. The way in which we live, the ways in which we plan for death and remember our loved one’s is increasingly moving into the digital realm. Health, social care and palliative care professionals need to adapt practice, policies and procedures to better support society with this ever-increasingly important area.

What to expect

The Digital Legacy Conference examines society’s attitudes and behaviours in relation to technology, end of life planning, death and bereavement. The conference’s goal is to empower palliative and end of life professionals to better understand this emerging space and adapt ways of working to embrace it.

Who is the Digital Legacy Conference for?

The Digital Legacy Conference is for those involved in care planning, social care, healthcare, palliative, hospice and bereavement professionals. It is also relevant for policy makers, technologists and academics working within this sector.

Nilay Erdem, Facebook Stakeholder and Engagement (EMEA) speaking at the Digital Legacy Conference 2019, EAPC 2019 in Berlin, Germany.

Call for abstracts / speakers

The call for abstracts has now opened. You can submit an abstract for consideration by clicking here. The closing date for abstracts is the 20th April.

Invited speakers

The following invited speakers will be sharing insights and experiences at this year’s Digital Legacy Conference. 

• Dr Ros Taylor MBE (Medical Director at Michael Sobell Hospice)
• Amarachukwu Callistus Nwosu (Senior Clinical Lecturer in Palliative Care at Lancaster Medical School & Research Lead (Marie Curie Hospice Liverpool)  
• Sarah Stanley (Research nurse at Marie Curie Hospice Liverpool)
• Professor Mark Taubert (Clinical Director at Velindre University NHS Trust in Wales & Founder of TalkCPR)
• James Norris (Founder of the Digital Legacy Association & MyWishes)

Who organises the Digital Legacy Conference

• The Digital Legacy Conference is organised by The Digital Legacy Association. The Digital Legacy Association is a global organisation dedicated to raising standards and developing best practices in areas relating to digital assets planning and digital legacy safeguarding. Previous Digital Legacy Conferences have taken place at UCL Partners (London), Siena College (New York), EAPC (Berlin), St Joseph’s Hospice (London) and online from Michael Sobell Hospice (London) for EAPC in 2021. 
• This year’s Digital Legacy Conference is being delivered during the 18th European Association of Palliative Care World Congress. Under the theme “Equity and Diversity in Palliative Care”, EAPC2023 will draw attention to the utmost need and goal of creating equity of fair access, opportunity, and advancement in palliative care for all people in need of this care.

Volunteer

If you are able to volunteer your time in Rotterdam please do get in touch

Reserve a ticket

You can register for an EAPC ticket by clicking here

Location (details and map)

This year’s EAPC and Digital Legacy Conference will take place at De Doelen in Rotterdam. The Digital Legacy Conference will take place on Saturday 17th June in the Van Cappellen Zaal room. Doors will open at 8:30am, the conference will start at 9am and conclude at 12pm (Location details).

Photo of the Van Cappellen Zaal 

To learn more visit www.DigitalLegacyConference.com