15th World Congress of the European Association for Palliative Care – Posters & Workshop


This year we will be co-charing a workshop and presenting two posters at the 15th World Congress of the European Association for Palliative Care in Madrid.



18th May: 08:00 – 08:45. Open Meeting Making the Most of Twitter at #EAPC2017 – An Interactive Workshop Everyone welcome. Please bring your smart phone or tablet.


  • James Norris (London, United Kingdom)
  • Catherine Walshe (Lancaster, United Kingdom)
  • Katherine E. Sleeman (London, United Kingdom)
  • Avril Jackson (London, United Kingdom)
  • Julie Ling (Dublin, Ireland)

The full EAPC 2017 scientific programme can be found here



The Digital Legacy Association (London, UK), Velindre NHS Trust (Cardiff, UK) and Mayo Clinic (Rochester, USA) have had two posters accepted for EAPC 2017. Further information can be found below:


Poster 1: Who Do You Think You Are? Anticipatory Digital Legacy Planning and how it can work


  • Authors: James Norris, Jake Strand, Mark Taubert
  • Institutions: Digital Legacy Association (London, UK); DeadSocial (London, UK); Mayo Clinic (Rochester, USA); Velindre NHS Trust (Cardiff, UK);


Text:  Over the last decades, the adoption of the Internet and subsequent communication tools like smartphones and social networks has transformed our lives. There is real value and significant substance attributed to each individual’s digital assets and the information that they leave in a digital format when they die. This can be of significant value to palliative care professionals, and existing data suggest that legacy interventions are beneficial when approaching the end of life. Upon death much of this information will form part of the deceased person’s overall estate;in essence, it becomes their very own digital legacy and can be important in the grieving process. The information left behind (the digital remains) is stored on social media accounts, websites, blogs, PayPal accounts, an iTunes library and devices like mobile phones, hard drives, tablets and computers. The importance and value of this information is significant and can form part of a cultural heritage, and may be accessible via  a few clicks for future generations

Most people, if they do any planning at all for what happens in the time after they die, focus on their physical possessions, and not what is stored digitally.

Should providing advice about such matters fall into the remit of the social, supportive and palliative care world? If so, how can this care be provided and to what extent? If not, who will carry out this task and then signpost patients to suitable areas of support? Palliative medicine teams are tasked to support the psychosocial, spiritual as well as the physical aspects of a patient’s care. Care is also necessarily targeted at supporting families.  Providing legacy planning, including digital legacy work can be considered part of the realm of palliative care team engagement.

DeadSocial was created four years ago to provide tools, tutorials and support for anyone who wishes to engage with this form of planning and legacy creation. Its purpose is to empower people to better understand what happens to their ‘digital footprint’ upon death. In doing so each visitor is able to make plans, and will be encouraged to address each area of their life that may become ‘locked’ or password-restricted to others, once they are gone.

The Digital Legacy Association’s mission is to raise standards within end of life and palliative care in areas of digital asset and digital legacy management and planning.  Much of their work revolves around training and defining best practice.


 Poster 2: Hashtag #DayOfTheDead-  Attitudes towards death ,on the internet and social media microblogs


  • Authors: James Norris, Jake Strand, Mark Taubert
  • Institutions: Digital Legacy Association, DeadSocial,


Text: The internet has been the biggest catalyst for change since the industrial revolution. It has changed the ways in which we communicate and now is changing how we prepare for death and remember our loved ones. Death and dying are still seen as taboo subjects in many societies, but social media microblogs appear to be bucking this trend. This poster will display realtime datasets obtained from the Digital Death Survey 2017 during the EAPC congress.

More information about the15th World Congress of the European Association for Palliative Care can be found here.