ArticleDigital health
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.
Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Connected Insulin Pens and Caps: An Expert's Recommendation from the Area of Diabetes of the Spanish Endocrinology and Nutrition Society (SEEN).Diabetes therapy : research, treatment and education of diabetes and related disorders · 2023Article
- A qualitative study of perceptions of control over potential causes of death and the sources of information that inform perceptions of risk.Health psychology and behavioral medicine · 2022Article
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Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.