As part of Commentary’s special feature on end-of-life care, James Norris, founder of the Digital Legacy Association, examines how a patient’s digital footprint is an increasingly common part of advance care planning.

The internet has been the biggest catalyst for change since the industrial revolution. It has changed the ways in which we consume and share information and, in doing so, the ways in which we interact with one another has changed forever. Recent Ofcom statistics reveal that adults in the UK now spend on average 22.9 hours a week online, with those aged 16–24 spending 35.2 hours a week online.

While online, many share personal thoughts, photos and videos on social media sites such as Facebook, Twitter, Instagram, etc. Prior to the internet, photos and videos existed only as physical assets (eg as photo albums, photo frames, video cassettes etc). Now, social media and connected devices (like mobile phones) allow these assets to be uploaded and shared online (often referred to as ‘in the cloud’). This allows conversations to break free of previous constraints and take place in real time. This enables friends and family members who may live many miles away to stay connected with their loved ones on a regular basis.

The Digital Legacy Association was launched three years ago at Hospice UK’s conference in Liverpool. It was apparent that people were not making suitable plans for their digital estate and that increased awareness, support literature, lobbying and training was required at a national level.

What is a digital legacy?

Upon death, the deceased person’s digital footprint (the digital information left online) and other media available about the deceased helps to form their ‘digital legacy’. For many people, the deceased’s digital legacy plays an important part in the mourning process. In the UK the deceased’s Facebook profile often becomes the main focal point to remember and share stories about a loved one.

Our Digital Death Survey indicates that the importance we place on our being able to view social media accounts following someone’s death is increasing year on year. For example, when respondents were asked: ‘If someone you care about were to die, how important would it be for you to be able to view their social media profiles?’ 45.2% of respondents replied ‘important’ or ‘very important’ in 2017, up from 37.3% in 2014.

What are digital assets?

The term ‘digital assets’ can refer to items such as music purchased through Apple, eBooks purchased through Amazon or photos and videos captured on mobile phone. It is increasingly important that the general public make plans for what should happen to their digital assets and their digital footprint in the event of death. Making suitable plans can help ensure sentimental photos, videos and documents are still accessible and not lost upon death. Pre-planning can also ensure that assets that are of monetary value, such as business files and purchased media, are still accessible.

Our research shows that most people are not making sufficient plans and as a result their digital assets – those of sentimental and monetary value – are being lost. When questioned in our surveys, 97% of respondents had made no plans to protect their digital assets.

Conversations about assets and legacy

It is important that healthcare and social care professionals speak with patients about their digital lives when having advance care planning conversations. For some people, simply telling a loved one the password for their mobile device before losing the ability to do so may be a suitable plan. However, more regular users of technology (who may use social media, gaming or have money stored and spent in PayPal, eBooks, music libraries etc) may prefer to document their wishes in a social media will.

Planning ahead

Our research indicates that the sentimental value placed on people’s digital legacy will continue to increase each year. While working for the Digital Legacy Association, I have often received the feedback that these issues are ‘very important for the younger generation’. Although we fully agree with this statement, one in four people over the age of 65 in the UK say that they are active on social media (Office for National Statistics 2016), and so we argue that digital asset and digital legacy planning is an important area for everyone regardless of age, religion, gender or creed.

James Norris is the founder of the Digital Legacy Association, a professional body dedicated to raising the quality of end-of-life care in all areas relating to the proection of digital assets and digital legacy.

  • This article appears in the February 2018 ‘End-of-life care’ issue of Commentary.
  • The original version of this article can be found here