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

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 

Plans for the 2023 EAPC World Congress are well underway. This will be their first in-person congress in 4 years and it will take place in Rotterdam, The Netherlands from 15 – 17 June 2023. Registration is now open on the congress website.

*The videos from this year’s conference can now be accessed (ticket holders only) by clicking here

Recap: The Digital Legacy Conference 2021 ‘PalliCovid & Exploring New Dimensions’

The importance of our digital lives is increasing. Personal, digital photos and videos are often saved behind password protected devices. The monetary value of purchased media, online only services and digital assets is also increasing. Managing and transferring digital possessions and online services upon death is becoming fragmented and complex.

It is important that professionals are able to assist patients, families and those they serve with relevant support and advice. The Digital Legacy Association argue that ‘digital assets planning and digital legacy safeguarding should form a holistic approach to advance care planning’

The International Digital Legacy Conference 2021 will take place on the eve of the European Association of Palliative Care World Congress 2021 (EAPC 2021). This year’s Digital Legacy Conference will be streamed live and be featured as part of EAPC 2021. The live stream will be accessible for free with an EAPC ticket. For those who are not attending EAPC 2021, a Digital Legacy Conference ticket can be purchased for £20 when visiting the Digital Legacy Conference website or directly from this ticket link.

This year’s conference will be chaired by Dr Ros Taylor MBE & James Norris.

Full Programme – Now available to stream

4:00pm: Welcome to the new world, a new world in which we all inhabit – Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)

4:20pm: Nothing We Do Online Will Exist After We Die and That’s Ok. – Dr John Troyer, Bath University (UK)

4:40pm: Life, death… Shouldn’t we talk about it with students? Issues arising from the creation of an online platform for the French medical and school staff – Nicolas El Haïk-Wagner & Caroline Tête, French Society for Palliative Care (France)

5:00pm: Netiquette for Dealing with Illness, Death, and Grief: Has COVID-19 impacted the rules? – Dr Carla Sofka, Siena College (USA)

5:20pm: The posthumous privacy paradox: Privacy preferences and behavior regarding digital remains – Tal Morse, Hadassah Academic College & Michael Birnhack Tel Aviv University (Israel)

5:50pm: “They were part of the family” – a look at grieving for a pet online. – Stephanie Owens, Cochrane (UK)

6:00pm: Digital Executor®: Unraveling the New Path for Estate Planning – Sharon Hartung, Captain (Ret’d), PEng, TEP, is the founder of Your Digital Undertaker (Canada)

6:20pm: Digital afterlife and the spiritual realm – Maggi Savin-Baden, University of Worcester (UK) 

6:40pm: Why creating a digital shrine for my Dad helped me with my grief. – Sandy Weatherburn, Social Embers (UK)

7:00pm: Designing for death, evolving DeadSocial into MyWishes – Marcos Sebastian, MyWishes Design Lead (UK)

7:20pm: Living beyond death; who cares? – Dr Erica Witkamp 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)

7:40pm: Designing for Choice at the End of Life: does COVID-19 Shift our Collective Experience of Death Online? – Dr Stacey Pitsillides, Northumbria University (UK)

8:00pm: Cryptocurrencies, Cryptoassets, and Inheritance Planning – Pamela Morgan, Empowered Law (Canada)

8:20pm: Palliative Pandemic and its Digital Divides – Professor Mark Taubert, Cardiff University (UK)

8:40pm: Digital Legacy and the idea of life as a work of art – Steve Fuller, University of Warwick (UK)

9:00pm: 2040: Death, bereavement and digital legacies   – Maneesh Juneja, Digital Health Futurist (UK) *Keynote

9:40pm: Closing remarks – Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice (UK), Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home (UK) & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)

The videos from this year’s conference can now be accessed by ticket holders by clicking here

The Digital Legacy Conference 2021 will examine how COVID-19 has changed and accelerated society’s attitudes and behaviours in relation to end of life planning, death and bereavement. It will review the impact of COVID-19 on Palliative Care (#PalliCovid) whilst ‘exploring new dimensions’ in the online and digital space.

Changes in processes, frameworks and laws are taking place. In the UK for example, people are currently allowed to have their last will and testament virtually witnessed. Technology platforms are evolving and society is aware of the positive, psychological impact attending virtual funerals can have. We have seen an increase in the variety of ways in which people are remembered through virtual memorials and different ways in which communication technologies like Skype, Zoom and WhatsApp can enable remote death bed goodbyes.

It is important that both professionals and the general public understand this emerging area. Once understood communication and end of life planning can be improved.

Who is the Digital Legacy Conference for?

Everyone is welcome to attend however the information shared is especially relevant to social care, healthcare, palliative, hospice, bereavement, legal, policy makers, academics, charity and funeral professionals.

Information exchange

As we all look ahead to the winter months, it is important that we share information and best practice amongst us. It is important that we celebrate excellent levels of care and support provided in different contexts and in different sectors. Through sharing and reflecting both speakers and attendees will be able to apply what they learn to their own practice and improve levels of communication and care with the communities they serve.

Full Programme

4:00pm: Welcome to the new world, a new world in which we all inhabit – Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)

4:20pm: Why Nothing We Do Online Will Exist After We Die and That’s Ok. – Dr John Troyer, Bath University 

4:40pm: Life, death… Shouldn’t we talk about it with students? Issues arising from the creation of an online platform for the French medical and school staff – Nicolas El Haïk-Wagner & Caroline Tête, French Society for Palliative Care

5:00pm: Netiquette for Dealing with Illness, Death, and Grief: Has COVID-19 impacted the rules? – Dr Carla Sofka, Siena College 

5:20pm: The posthumous privacy paradox: Privacy preferences and behavior regarding digital remains – Tal Morse, Hadassah Academic College & Michael Birnhack Tel Aviv University

5:40pm: “They were part of the family” – a look at grieving for a pet online. – Stephanie Owens, Cochrane and Dying Matters

6:00pm: Digital Executor®: Unraveling the New Path for Estate Planning – Sharon Hartung, Captain (Ret’d), PEng, TEP, is the founder of Your Digital Undertaker

6:20pm: Digital afterlife and the spiritual realm – Maggi Savin-Baden, University of Worcester, UK 

6:40pm: Why creating a digital shrine for my Dad helped me with my grief. – Sandy Weatherburn, Social Embers

7:00pm: Designing for death, evolving DeadSocial into MyWishes – Marcos Sebastian, MyWishes Design Lead

7:20pm: Living beyond death; who cares? – Dr Erica Witkamp 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 

7:40pm: Designing for Choice at the End of Life: does COVID-19 Shift our Collective Experience of Death Online? – Dr Stacey Pitsillides, Northumbria University

8:00pm: Cryptocurrencies, Cryptoassets, and Inheritance Planning – Pamela Morgan, Empowered Law

8:20pm: Palliative Pandemic and its Digital Divides – Professor Mark Taubert, Cardiff University 

8:40pm: Digital Legacy and the idea of life as a work of art – Steve Fuller, University of Warwick

9:00pm: 2040: Death, bereavement and digital legacies – Maneesh Juneja, Digital Health Futurist (Keynote)

9:40pm: Closing remarks –  Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)

10:00pm: Close

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

We are delighted to announce that Dr Ros Taylor will be chairing the Digital Legacy Conference for the second consecutive conference. Ros is the Medical Director at Michael Sobell Hospice and Harlington Hospice. She played a leading role in re-opening the bedded unit at Michael Sobell Hospice in 2019.

Ros qualified as a doctor at Cambridge University in 1980. She initially worked as a GP in Cumbria. In 1992 she joined some pioneers to establish a palliative care unit in West Cumbria Hospital and became enthused by the speciality. In 1996, she took on the leadership role at the Hospice of St Francis in Berkhamsted, Herts, a post she held until March 2015.

A key achievement at St Francis was securing a site for a new 14-bedded hospice building, overseeing the construction project until its completion in 2007.

In 2015 she was appointed Clinical Director at Hospice UK, a national umbrella charity for the hospice movement, and then went back to the bedside as a senior physician in the busy palliative care team at the Royal Marsden and Royal Brompton Hospitals in London.

Dr Taylor now has over 28 years experience in palliative care and was awarded an MBE for Services to Hospice Care following a nomination by a patient in 2014. She is a senior advisor to the Montreal 2022 International Congress on Palliative Care.

Ros will chair this year’s conference from Michael Sobell Hospice along with James Norris (as the co-chair). She tweets as @hospicedoctor

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

The Digital Legacy Conference 2019 took place on Friday 24th May at the ESTREL, in Berlin, Germany. This year’s Digital Legacy Conference was programmed as part of The 16th World Congress of the European Association of Palliative Care. *If you would the Digital Legacy Conference 2020 to take place in your hospice, hospital or country contact us via: https://digitallegacyassociation.org/about/contact

To view these photos in full size visit the public photo album on the Digital Legacy Association’s Facebook page.

We would like to thank our amazing speakers, the European Association of Palliative Care World Congress (EAPC) and everyone who attended.

We hope to see you again at the Digital Legacy Conference 2020.

The Digital Legacy Conference will return to Europe for this year’s event. Last year the conference was hosted by Siena College in New York and we welcomed a diverse range of speakers ranging from a funeral director to those within the Policy and Legacy team at Facebook.

For our 5th, annual conference we will explore and help define the role of the palliative care professional in relation to the digital asset planning, online support and digital legacy. This year’s conference will take place at the 16th World Congress of the European Association of Palliative Care in Berlin on the 24th May. The Digital Legacy Conference will welcome 200 attendees on Friday night for a evening of innovation and discussion. The conference is free for all those who have purchased EAPC badges. Tickets will also be made available (for free) for those who wish to attend the Digital Legacy Conference but are unable to attend EAPC 2019.

We sincerely hope that you can join us.