The Digital
Legacy Conference
25th October, 2024, PHPCI, Bern Switzerland
2024-10-25 :13:30
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Digital Legacy Conference News

Digital Death Survey 2024 - Banner

Digital Death Survey – Launches today

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
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Digital Legacy Conference 2024 – Full Agenda

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.

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Fabulous autumn view of Bern city on  Aare river during evening with Pont de Nydegg bridge , cathedral of Bern and Nydeggkirche - Protestant church. Location: Bern, Canton of Bern, Switzerland, Europe

First wave of speaker announcements

We are delighted to announce the first three abstracts and those presenting the abstracts at this year’s Digital Legacy Conference. These are:

  • ‘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.

Learn more about the Digital Legacy Conference
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European Law Institute

Digital Legacy Association appointed as an ‘Observer’ for the European Law Institute – Digital Assets Project

European Law Institute 

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.

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Stephanie owens - digital legacy conference

Speaker & abstract announcement: Stephanie Owens

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?
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Dr Amara Nwosu

Speaker & abstract announcement: Dr Amara Nwosu

Dr Nwosu, Senior Clinical Lecturer in Palliative Care at Lancaster Medical School will be speaking at the Digital Legacy Conference 2023
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Professor Mark Taubert

Speaker & abstract announcement: Professor Mark Taubert

Professor Mark Taubert will discuss 'What makes for a ‘good enough’ digital death?' at the Digital Legacy Conference 2023
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Sarah

Speaker & abstract announcement: Sarah Stanley

A Grounded Theory Study Exploring Palliative Care Healthcare Professionals’ Experiences of Managing Digital Legacy as Part of Advance Care Planning for people with terminal illness
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Announcement: This year’s Digital Legacy Conference

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 

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Digital legacy conference videos now live

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

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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.

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