The Digital Legacy Association is a nationwide organisation providing frameworks and training for healthcare and social care professionals.
The Digital Legacy Association supports healthcare professionals, hospices and those delivering end of life care with information and training. We also provide a free framework for healthcare professionals to view and download. The first draft version of this document is now available below.
Why the Digital Legacy Association is needed
The Internet is the biggest and most ‘disruptive’ force since the industrial revolution. As a result, society is spending an ever increasing amount of time online. This has led to a range of benefits whilst changing the way in which society mourns and remembers the deceased into posterity.
The Digital Legacy Association helps those delivering end of life understand this ever evolving space. Our framework, training and support further explains why there can be a huge sentimental and monetary value placed on someones digital assets and digital legacy.
Data from the Digital Death Survey 2015 (the full report will be published in early 2016)
“Social media has a key place in our lives now, and we are learning that it becomes even more crucial as people face the end of their lives. It helps patients stay connected and boosts self esteem. But patients and those special to them don’t know how to manage this personal vital resource after a death – memories, music, photos and messages are lost. We are delighted that the Digital Legacy Association is being launched at our annual Hospice UK Conference for over 700 staff working with families at the end of life’
– Dr Ros Taylor MBE National Director for Hospice Care, Hospice UK
“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 the Dying Matters Coalition
“In recent years, the ways people choose to remember deceased family members and friends has changed. Trips to the cemetery are replaced by online memorials and social media sites which can be updated regularly and accessed freely. Healthcare professionals need to engage with service users to discuss digital legacies. This, in turn builds confidence in discussing dying, death and bereavement. St Christopher’s are pleased to have supported DeadSocial in the foundation of the Digital Legacy Association.”
– Ruth Sheridan, Director of Supportive Care, St Christopher’s Hospice.
“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.”
– Dr Mark Taubert, NHS Velindre Trust
“Digital Legacy Association formalises this by working with charities, hospices and hospitals to help those dying to understand the online options available, to help them live on.”
-Amy Kean, The Drum
We would like to thank St Christopher’s Hospice for encouraging us and supporting us with the launch and development of the Digital Legacy Association.
Founded by Dame Cicely Saunders in 1967 St Christopher’s Hospice was the first modern hospice, now providing the highest quality care to over 2,500 dying individuals each year on our inpatient wards and in people’s own homes.