Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data

Richard Brown*, Elizabeth Sillence, Lynne Coventry, Emma Simpson, Shema Tariq, Jo Gibbs, Abigail Durrant

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)
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Abstract

Background: The emerging landscape of patient-generated data (PGData) provides an opportunity to collect large quantities of information that can be used to develop our understanding of different health conditions and potentially improve the quality of life for those living with long-term health condition (LTHCs). If the potential benefits of PGData are to be realised, we need a better understanding of the psychological barriers and facilitators to the collection and beneficial sharing of health and lifestyle data. Due to the understudied role that stigma plays in sharing PGData, we explore the attitudes and experiences of those living with potentially stigmatised LTHCs with respect to collecting and sharing health and lifestyle data. Methods: This study used semi-structured interviews and a card sorting task to explore the attitudes and experiences of people living with potentially stigmatised LTHCs. Fourteen adult participants who reported having a range of conditions were recruited in England. Template analysis was used to analyse interview transcripts and descriptive statistics were used for the card sorting task. Results: The findings present four overarching themes: Preferences for collecting health and lifestyle data, Importance of anonymity, Expected use of data, and Sources of emotional support. Participants illustrated a general willingness to share health and lifestyle data; however, there were some notable differences in sharing experiences, varying both by information type and recipient group. Overall, participants did not identify health-related stigma as a barrier to collecting or sharing their personal health and lifestyle data. Conclusions: We outline a number of preferences that participants feel would encourage them to collect and share data more readily, which may be considered when developing data sharing tools for the future.

Original languageEnglish
Article number205520762210897
Pages (from-to)1-16
Number of pages16
JournalDigital Health
Volume8
Early online date18 Apr 2022
DOIs
Publication statusPublished - 2022

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