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“不确定分享对我有什么额外的好处”:理解心血管疾病患者如何将个人健康数据与同行分享。

"Not Sure Sharing Does Anything Extra for Me": Understanding How People with Cardiovascular Disease Conceptualize Sharing Personal Health Data with Peers.

机构信息

Department of Industrial Design, Eindhoven University of Technology, 5612 AE Eindhoven, The Netherlands.

出版信息

Int J Environ Res Public Health. 2022 Aug 2;19(15):9508. doi: 10.3390/ijerph19159508.

Abstract

As people deal with cardiovascular disease (CVD), they are to self-monitor routinely and be aware of complications and the corresponding course of action. Engaging in these self-care behaviors is conducive to gaining knowledge of health status. Even so, knowledge of the self may be insufficient in making sense of chronic conditions. In constructing a new normal after health-related life disruptions, people often turn to peers (others facing similar health issues) and share personal health information with each other. Although health information-sharing behavior is well-documented, it remains underexplored what attitudes individuals with chronic conditions, such as CVD, have toward disclosing personal health data to peers and exploring those of others with similar conditions. We surveyed 39 people who reported being diagnosed with CVD to understand how they conceptualize sharing personal health data with their peers. By analyzing qualitative survey data thematically, we found that respondents expressed themselves as uncertain about the benefits of interacting with peers in such a manner. At the same time, they recognized an opportunity to learn new ideas to enhance CVD self-care in mutual data sharing. We also report participants' analytical orientation toward this sort of data sharing herein and elaborate on what sharing a range of personal health data could mean. In light of the existing literature, this study unpacks the notion of sharing in a different population/pathology and with more nuance, particularly by distinguishing between disclosing one's data and exploring others'.

摘要

当人们应对心血管疾病 (CVD) 时,他们需要定期进行自我监测,并了解并发症和相应的应对措施。参与这些自我护理行为有助于了解健康状况。即便如此,自我认知可能不足以理解慢性疾病。在经历与健康相关的生活中断后构建新常态时,人们通常会向同龄人(面临类似健康问题的人)寻求帮助,并相互分享个人健康信息。尽管健康信息共享行为已有充分记录,但对于患有 CVD 等慢性疾病的个体向同龄人透露个人健康数据并探索具有类似情况的他人健康数据的态度,仍有待进一步探讨。我们调查了 39 名报告患有 CVD 的人,以了解他们如何看待与同龄人分享个人健康数据。通过对定性调查数据进行主题分析,我们发现受访者表示自己不确定以这种方式与同龄人互动的好处。同时,他们认识到在相互数据共享中学习新想法以增强 CVD 自我护理的机会。我们还在此报告参与者对这种数据共享的分析倾向,并详细阐述了分享一系列个人健康数据可能意味着什么。鉴于现有文献,本研究从不同的人群/病理角度更细致地剖析了分享的概念,特别是通过区分透露自己的数据和探索他人的数据。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5b14/9368547/3a7a0a22acd8/ijerph-19-09508-g001.jpg

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