Surveying attitudes on personal health data sharing

INTUIT investigated Trust, Identity, Privacy and Security (TIPS) concerns around the sharing of self-generated health and lifestyle data primarily among people living with HIV, but also for other potentially stigmatised conditions. One strand of the project focused on examining whether those TIPS issues also play a role in the attitudes and experiences of those living with other potentially stigmatising long-term health conditions (LTHC). With this strand of work, we address the following aims.

• To explore the attitudes and experiences of people living with potentially stigmatised LTHCs with respect to collecting and sharing their personal health and lifestyle data across multiple contexts.
• To identify key psychological facilitators and barriers to the beneficial sharing of health and lifestyle data.
• To draw parallel with other health conditions and generate transferable insights that can benefit people living with long-term health conditions more broadly.

Survey exploring attitudes of those living with long-term health conditions towards sharing health and lifestyle data

The Northumbria team led by Coventry and Sillence conducted a quantitative, large scale survey study into the attitudes of those living with long-term conditions towards sharing health and lifestyle data with others. The aim was three-fold, to investigate: (1) if TIPS concerns previously identified by the qualitative study of specific patient groups are reported across multiple conditions; (2) how willingness to share health and lifestyle data with others varies by information type and by recipient group among those living with long-term conditions; (3) the roles that perceptions of stigma, risk and sensitivity of information play in the sharing of health and lifestyle information among those with long-term conditions, and to identify if differences in willingness to share varies between those who believe that there is stigma associated with their condition and those who don’t.

250 UK adult participants who reported living with a long-term health condition were recruited. 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.

Insights

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.

Publication

R. Brown, L. Coventry, E. Sillence, J. Blythe, S. Stumpf, J. Bird, A. Durrant (2022). ‘Collecting and sharing self-generated health and lifestyle data: understanding barriers for people living with long-term health conditions–a survey study’. Digital Health, 8, 8, 20552076221084458. Link to publication