West Midlands Collaboration Actioning Research in End of life and Supportive care.

Digital Legacy

Do we prepare patients for their digital legacy?

A survey of healthcare professionals in the West Midlands

Background

Social media is becoming a more prominent part of our everyday lives. As a consequence we will be leaving a digital legacy after death. Digital legacy is the digital information that is available about someone following their death, which may include website or blog listings, social media profiles, photos, videos and gaming profiles. Many will find it a comfort that their legacy remains on social media but there can also be negative consequences in relation to death, dying and bereavement. This survey was carried out to establish whether we prepare patients for their digital legacy within the West Midlands.

Methods

An online survey was sent to 10 hospices within the West Midlands over a 6 week period with an initial email and then a reminder at 3 weeks. The survey was circulated by the hospices to the doctors, nurses and social workers.

Results

210 responses were collected (35% response rate). The majority of respondents were from nurses (77%). Doctors accounted for 22% of the responses and 7% were from social workers. 96% had never discussed digital legacy with patients. Reasons for not having such discussions largely related to it not being considered, lack of knowledge about digital legacy or it not being felt to be appropriate or important.

Discussion

This survey of health and social care professionals shows that we do not discuss digital legacy with patients. There is a potential unmet need that we are not addressing for patients. There is an education need across the region to raise awareness and confidence of digital legacy, which the undertaking authors will be addressing.