The Digital
Legacy Conference
25th October, 2024, PHPCI, Bern Switzerland
2024-10-25 :13:30
  • Home
  • Programme
  • About
    • About
    • What to expect (videos)
    • Previous conferences…
    • Study Days
  • Location
  • Press Release
  • News
  • Sponsors
  • Contact
  • Home
  • Programme
  • About
    • About
    • What to expect (videos)
    • Previous conferences…
    • Study Days
  • Location
  • Press Release
  • News
  • Sponsors
  • Contact

Uncategorized

Digital Death Survey 2024 - Banner

Digital Death Survey – Launches today

Uncategorized digital death, digital death data, digital death survey, digital legacy, digitallegacy data

The Digital Death Survey explores how technology is changing society’s attitudes and behaviours in areas relating to care planning, death and bereavement. The secondary purpose of the survey is to familiarise participants with the importance of making plans for their increasingly complex, digital lives ensuring that appropriate plans are made for themselves, their digital possessions and those they care about.

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
View and Complete The Digital Death Survey 2024
Read more

Digital Legacy Conference 2024 – Full Agenda

Uncategorized

The full agenda contained within this year’s programme can be found below. These will be provided to all attendees in a printed format on Friday.

Read more
61252669_810679512620843_8447249739702861824_o_810679499287511

Announcement: This year’s Digital Legacy Conference

Uncategorized digital legacy, digital legacy conference, digital legacy congress, eapc2023

The Digital Legacy Conference – 17th June 2023, Press release. Download this press release (Download Word doc) or (View Google Doc)

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 

Read more
cropped-414471-bigthumbnail2.jpg

Digital legacy conference videos now live

Uncategorized

Ahead of the Digital Legacy Conference 2023 we have made a number of videos live from the Digital Legacy Conference 2021. The DLC2021 took place as a online only conference due to COVID-19, social distancing restrictions. It featured as part of EAPC2021. To watch 12 short, snippet videos click here

Watch more videos by cicking here

Read more

Save the date – 15 – 17 June 2023.

Uncategorized

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.

Read more

Digital Legacy Conference 2021 – Full conference videos on demand

Uncategorized

*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

Read more
61223413_810680052620789_6286447385233063936_o_810680045954123

Why YOU should attend the Digital Legacy Conference!

Uncategorized digital assets, digital legacy
It is important that we share information and best practice, it is important to celebrate the excellent levels of care and support provided in different contexts and different circumstances.
Read more
dr ros taylor

Speaker Announcement: Dr Ros Taylor MBE

Uncategorized
Dr Ros Taylor will be chairing this year's Digital Legacy Conference
Read more

The Digital Legacy Conference 2019…and thats a wrap

Uncategorized

Thank you to all who spoke and attended this year’s conference. We look forward to welcoming you back again in 2020.

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.

Read more

The Digital Legacy Conference 2019, Berlin

Uncategorized

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.

Read more
Older Entries

The Digital Legacy Conference is an international, not for profit conference organised by the Digital Legacy Association. It takes place in a different city each year.

Stay up to date on Facebook
Stay up to date on X (Twitter)
Follow @digitallegacy24
Click here to reserve a PHPCI 2024 ticket

*If you are not attending PHPCI you can still attend the Digital Legacy Conference by reserving one of the limited, free tickets. To do so click here.

This website is provided by the Digital Legacy Association and hosted using 100% green and renewable energy.