Digital Legacy Association launched

12 November 2015
A new organisation which aims to provide guidance for healthcare professionals, patients and their carers on managing social media and other digital assets at the end of life has been launched.

Digital legacy association website

The creation of the Digital Legacy Association was announced at Hospice UK's national conference in Liverpool on Wednesday 11 November. The association is dedicated to raising the quality of end of life care in all areas relating to digital assets and digital legacy. It aims to support hospices and carers in providing a high level of support, particularly through the use of digital technologies. 

With the growth of social media over the last ten years, the way in which society plans for death, mourns and remembers loved ones has changed: the Digital Death Survey 2014 found that 62% of us consider being able to access a deceased friend or family member's social media accounts as either 'important' or 'very important'.

The Association has created a 'Digital asset and end of life framework' to educate healthcare professionals in this area. This document is free to download and will be updated each time a social media network makes a change to its terms and conditions for legacy accounts.  

In addition, a nationwide training programme for healthcare professionals in digital end of life and digital legacy will begin in February 2016.

The Digital Legacy Association is the brainchild of James Norris, who also founded DeadSocial, a free tool for posting messages on social media following death. James explained: "Over the last few years the sentimental and monitory value of our online lives has increased. With these recent developments, it is becoming increasingly confusing for those left behind when trying to access, view, manage and close the deceased’s online accounts.

"Furthermore, when someone dies their digital footprint helps contribute to their digital legacy and how they are remembered. Ensuring that suitable preparations are made in this area may play a part in ensuring that a ‘good death’ occurs. The Digital Legacy Association has been formed to provide support and training for hospices and healthcare professionals in this ever-evolving area."

“Ensuring people understand how to protect and pass on their digital legacy is an increasingly important issue, which is why we are delighted that the Digital Legacy Association has been launched. Talking more openly about dying, death and bereavement benefits us all, as does putting plans in place for when we are dying, and for after our death.”

Claire Henry,  Chief Executive of Dying Matters, is fully supportive of the association. She commented: "Ensuring people understand how to protect and pass on their digital legacy is an increasingly important issue, which is why we are delighted that the Digital Legacy Association has been launched. Talking more openly about dying, death and bereavement benefits us all, as does putting plans in place for when we are dying, and for after our death.”

Dr Mark Taubert of the Velindre NHS Trust praised the initiative, saying: "The number of people living with life-limiting conditions requiring good forward planning for when they get unwell is vast. In hospices, the community and in hospitals, many patients are asking their healthcare providers questions about dying, death and what happens after, including their digital possessions.

"Many healthcare providers do not know what advice to give with regard to the important issue of digital advance planning. The Digital Legacy Association should become a go to organisation which patients, carers and healthcare providers can use for valuable information and resources." 

James is keen to hear views on the 'Digital asset and digital end of life framework'. He says: "Its purpose is to help educate and encourage healthcare professionals to have conversations about these areas with those nearing the end of their lives. The framework will be updated on a regular basis and will always be free to download. We would love to hear your feedback from this first draft version. We will be releasing the full, updated version on 1 January 2016.” 

More

The Digital Legacy Association will be providing training in digital legacy, social media and internet enabled devices, such as mobile phones and tablets, in relation to end of life from February 2016. Find out more at www.DigitalLegacyAssociation.org

 

Not registered?

Register Now

Log in to post

Find Me Help

Find local help and support for people in the last years of life, or add your own service. 

Find Me Help

Awareness Week Twitter chats

Every weekday during Awareness Week, we're hosting a Twitter chat looking at a different aspect of end of life planning.

Find out more

E-newsletter sign up

Getting the latest Dying Matters news delivered straight to your inbox.

Sign up today!

Poll

Which of the following describes how you would feel talking to someone close to you about their end of life wishes.

Share your event

Are you organising an event linked to death, dying or bereavement? Tell us what you're doing and we'll share it with our supporters. Add it to our Events Calendar now.

Share your event