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.
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.
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DOI：
10.1177/20552076221089798
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发表时间：
2022-01
期刊：
影响因子：
3.9
通讯作者：
Lloyd, Karen
中科院分区：
文献类型：
--
作者：
Brown, Richard;Sillence, Elizabeth;Coventry, Lynne;Simpson, Emma;Gibbs, Jo;Tariq, Shema;Durrant, Abigail C.;Lloyd, Karen
关键词：
新兴的患者生成数据(PGData)提供了收集大量信息的机会，这些信息可用于加深我们对不同健康状况的了解，并潜在地提高长期健康状况(LTHC)患者的生活质量。如果要实现PGData的潜在好处，我们需要更好地了解收集和有益地分享健康和生活方式数据的心理障碍和促进者。由于污名在共享PGData中所起的作用研究不足，我们探讨了那些生活在可能受到污名的LTHC的人在收集和共享健康和生活方式数据方面的态度和经历。这项研究使用半结构化访谈和卡片分类任务来探索与可能被污名化的LTHC一起生活的人的态度和经历。在英格兰招募了14名报告患有一系列疾病的成年参与者。访谈成绩单采用模板分析，卡片分类采用描述性统计。这些发现提出了四个主要主题：收集健康和生活方式数据的偏好，匿名的重要性，数据的预期使用，以及情感支持的来源。参与者显示出分享健康和生活方式数据的总体意愿；然而，在分享经验方面存在一些显著的差异，不同的信息类型和接受群体有所不同。总体而言，参与者没有将与健康相关的耻辱视为收集或共享他们的个人健康和生活方式数据的障碍。我们概述了参与者认为将鼓励他们更容易收集和共享数据的一些偏好，这些偏好可能会在为未来开发数据共享工具时被考虑。
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. 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. 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. 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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