Department of Interdisciplinary Medicine, University of Bari, Bari, Italy.
Department of Economics, Management and Business Law, University of Bari, Bari, Italy.
Front Public Health. 2023 Jul 20;11:1213615. doi: 10.3389/fpubh.2023.1213615. eCollection 2023.
In the age of digitalization and big data, personal health information is a key resource for health care and clinical research. This study aimed to analyze the determinants and describe the measurement of the willingness to disclose personal health information.
The study conducted a systematic review of articles assessing willingness to share personal health information as a primary or secondary outcome. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis protocol. English and Italian peer-reviewed research articles were included with no restrictions for publication years. Findings were narratively synthesized.
The search strategy found 1,087 papers, 89 of which passed the screening for title and abstract and the full-text assessment.
No validated measurement tool has been developed for willingness to share personal health information. The reviewed papers measured it through surveys, interviews, and questionnaires, which were mutually incomparable. The secondary use of data was the most important determinant of willingness to share, whereas clinical and socioeconomic variables had a slight effect. The main concern discouraging data sharing was privacy, although good data anonymization and the high perceived benefits of sharing may overcome this issue.
在数字化和大数据时代，个人健康信息是医疗保健和临床研究的关键资源。本研究旨在分析个人健康信息披露意愿的决定因素，并描述其测量方法。
本研究对评估个人健康信息共享作为主要或次要结果的文章进行了系统综述。该综述遵循系统评价和荟萃分析的首选报告项目协议。纳入了英语和意大利语同行评议的研究文章，对出版年份没有限制。研究结果进行了叙述性综合。
搜索策略共找到 1087 篇论文，其中 89 篇通过了标题和摘要以及全文评估的筛选。
尚未开发出用于衡量个人健康信息共享意愿的验证性测量工具。综述中的论文通过调查、访谈和问卷来衡量这一意愿，这些方法之间是不可比的。数据的二次使用是决定共享意愿的最重要因素，而临床和社会经济变量的影响较小。阻碍数据共享的主要问题是隐私，但良好的数据匿名化和共享的高预期收益可能会克服这一问题。
