Digital Legacy Association
– Press release
(For release on 10th November 2015)
The Digital Legacy Association has been launched to help provide guidance
for healthcare professionals and patients and their carers. It was launched
today at the start of Hospice UK’s annual conference in Liverpool.
The Digital Legacy Association has been setup to ensure that those who reside in
the UK receive the best end of life care in today’s digital and social media age.
The Digital Legacy Association supports hospices and carers to help ensure that
a high level of relevant support is delivered by healthcare professionals and in
these emerging areas.
Over the last 10 years the way in which society plans for death, mourns and
remembers their loved ones has changed.
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
Today the Digital Legacy Association released a ‘digital asset and digital end of
life framework’ to educate healthcare professionals in this area. This document is
free to download and will be updated each time relevant changes are made by
online services (like Facebook, Google, iTunes etc). Changes will be carried out
with the guidance of healthcare professionals, hospices, industry professionals
and legal experts.
A nationwide training programme in digital end of life and digital legacy for
healthcare professionals will commence from February 2016. Those wanting to
express early interest in attending the course should visit:
www.DigitalLegacyAssociation.org
“Over the last three years it has become apparent that healthcare professionals
require support in this new and ever evolving area. By announcing the Digital
Legacy Association at Hospice UK’s conference we hope to raise awareness within
hospice sector and evoke discussion.”
James Norris, The Digital Legacy Association
‘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 so memories, music,
photos and messages are not 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, Velindre NHS Trust
Further information can be found at www.DigitalLegacyAssociation.org
Press Contact:
James Norris
07868 823055
hello@digitallegacyassocation.org
www.DigitalLegacyAssociation.org
*Screenshots from the website and the framework can be found on the following
page.
Homepage Screenshot
Framework Screenshot