Collecting and sharing self-generated health and lifestyle data: understanding barriers for people living with long-term health conditions – a survey study

Background: The growing popularity of collecting self-generated health and lifestyle data presents a valuable opportunity to develop our understanding of long-term health conditions and improve care. Barriers remain to the effective sharing of health and lifestyle data by those living with long-term health conditions which include beliefs around concepts of Trust, Identity, Privacy and Security, experiences of stigma, perceptions of risk and information sensitivity. Method: We surveyed 250 UK adults who reported living with a range of long-term health conditions. We recorded data to assess self-reported behaviours, experiences, attitudes and motivations relevant to sharing self-generated health and lifestyle data. We also asked participants about their beliefs about Trust, Identity, Privacy and Security, stigma, and perceptions of risk and information sensitivity regarding their health and lifestyle data. Results: Three-quarters of our sample reported recording information about their health and lifestyle on a daily basis. However, two-thirds reported never or rarely sharing this information with others. Trust, Identity, Privacy and Security concerns were considered to be ‘very important’ by those with long-term health conditions when deciding whether or not to share self-generated health and lifestyle data with others, with security concerns considered most important. Of those living with a long-term health condition, 58% reported experiencing stigma associated with their condition. The greatest perceived risk from sharing with others was the potential for future harm to their social relationships. Conclusions: Our findings suggest that, in order for health professionals and researchers to benefit from the increased prevalence of self-generated health and lifestyle data, more can be done to address security concerns and to understand perceived risks associated with data sharing. Digital platforms aimed at facilitating the sharing of self-generated health and lifestyle data may look to highlight security features, enable users to control the sharing of certain information types, and emphasise the practical benefits to users of sharing health and lifestyle data with others.