About us

Digital Legacy Association

The Digital Legacy Association is the professional body dedicated to raising the quality of end of life care in all areas relating to digital asset and digital legacy. Our mission is to help ensure that everyone’s end of life wishes are met both in the real world and the digital realm. We do this by supporting the general public and by developing standards, frameworks and toolkits with charities and organisations that address end of life.

Our work includes

  • Campaigning and raising awareness around digital assets and digital legacy.
  • Advising the British government (Law Commission) to improve UK law.
  • Advising the Law Society to improve solicitor guidelines.
  • Working with NHS England and NHS Wales to develop toolkits and improve standards.
  • Providing frameworks for healthcare professionals and carers to follow.
  • Providing training courses for different sectors across the United Kingdom.
  • Researching and developing best practice for both the general public and healthcare professionals.
  • Working with hospices and charities to develop their own processes in relation to digital asset and digital legacy support.
  • Proving content and support for charities, hospices and the end of life sector.
  • Partnering with technology providers and devising programmes that utilise technology, social media and connected devices within the hospice sector.
  • Speaking at conferences and events .
  • Organising the annual ‘Digital Legacy Conference’ to discuss and celebrate excellence within these new and exciting areas.

Free framework for healthcare professionals and carers

A framework has been developed by technologists, healthcare professionals, scholars and patients. It uses public data, patient feedback and a number of other sources to validate the framework and the proposed methodology outlined for healthcare professionals and those providing end of life care.

To find out more about the Framework click here

Nationwide training

Training session in Camden, London
We train healthcare professionals and end of life carers. From February 2016 we will provide a fully accredited workshop and deliver it across the United Kingdom.  If you would like us to run a workshop in your hospice hospital or local communal space please do get in touch.

Support for the general public

We provide support directly for the general public through training, printed material and online tutorials.

Research & development

Our annual digital death survey explores societies ever changing attitudes towards death and bereavement. Unlike other such surveys and research it has a strong focus on how the internet has impacted on death, grief, remembrance and tradition. The survey can be answered anonymously and the results published.

62% of us consider being able to access a deceased friend or family member's social media accounts 'important' or 'very important'  - Digital Death Survey 2014

Think Tanks

We have ran think tanks for healthcare professionals, hospices, CCGs and legal organisations.

"I learnt so much that I had never thought about" - Attendee feedback. Think Tank for Hospice of St Francis

To find out more visit https://digitallegacyassociation.org/about/reports

Digital Legacy Conference

Ian Bond, Law Society
Ian Bond from the Law Society speaking at the Digital Legacy Conference
  • The 1st Annual Digital Legacy Conference took place at University College London Partners (UCLP) on the 23rd May 2015. It brought together a range of academics and business professionals to help address areas relating to death and dying in today’s ever increasingly digitised world. It is now an annual event that takes place during Dying Matters Awareness Week. (Further details)
  • The 2nd Annual Digital Legacy Conference took place at St Joseph’s Hospice on the 14th May 2016. Once again experts within the sector met and networked at this very specific event. (Further details)
  • The 3rd Annual Digital Legacy Conference took place at Siena College in New York State, USA.  Shelby Lindblad (Product Designer at Facebook) and Kim Malfacini (Associate Manager of Product Policy at Facebook)  provided the keynote. (Further details)
  • The 4th Annual Digital Legacy Conference took place at the ESTREL in Berlin, Germany. It featured as part of the European Association of Palliative Care World Congress. (Further details)
  • The 5th annual Digital Legacy Conference (TBC)

If you would like us to support you feel free to contact us

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