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Digital Legacy Association launches at Hospice UK conference

Author: Tom Moran
11 November 2015

The Digital Legacy Association, 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, was launched yesterday at Hospice UK’s annual conference in Liverpool.

Set up 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 will support hospices and carers to help ensure that a high level of relevant support is delivered by healthcare professionals and in these emerging areas.

With the advent of social media, the way in which society plans for death, mourns and remembers their 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'.

It is hoped that the Digital Legacy Association’s digital asset and digital end of life framework will help 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 (such as Facebook, Google or iTunes). Changes are to be carried out with the guidance of healthcare professionals, hospices, industry professionals and legal experts.

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

James Norris, the founder of the Digital Legacy Association, explained: "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 the hospice sector and evoke discussion."

He continued: "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."

Norris added that he was keen to hear feedback on the digital asset and digital end of life framework; he plans to keep it updated on a regular basis, with a full version to be released on 1 January 2016.

The launch was welcomed by professionals within the hospice sector, with Dr Ros Taylor, national director for hospice care at Hospice UK, and Claire Henry, chief executive of the National Council for Palliative Care and the Dying Matters Coalition, both praising the initiative.

"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," Taylor said. "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 conference."

Henry added: "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."

More information about the Digital Legacy Association can be found on its website.

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