Global Center for Medical Engineering and Informatics, Osaka University, Japan.
Academic Center for Computing and Media Studies, Kyoto University, Japan.
Stud Health Technol Inform. 2021 May 27;281:1051-1055. doi: 10.3233/SHTI210345.
Using an online survey, we examined the relationships between the perceived usefulness, sensitivity, and anonymity of personal health data and people's willingness to share it with researchers. An analysis of 112 responses showed that people's willingness and perceptions are related to the type of the data, their trust in the data's anonymity, and their personal sociodemographic characteristics. In general, we found that people do not completely trust that their identities remain anonymous when sharing data anonymously with researchers. We also found that they are more willing to share personal health data with researchers if they perceive it as useful for public health research, not sensitive, and if they trust that their identity will remain anonymous after sharing it. We also found that people's age, gender, occupation, and region of residence may be related to their perceptions regarding the sharing of personal health data.
我们通过在线调查研究了人们对个人健康数据的感知有用性、敏感性和匿名性，以及他们与研究人员分享这些数据的意愿之间的关系。对 112 份回复的分析表明，人们的意愿和看法与数据的类型、他们对数据匿名性的信任，以及他们个人的社会人口统计学特征有关。总的来说，我们发现当人们匿名地与研究人员分享数据时，他们并不完全相信自己的身份仍然是匿名的。我们还发现，如果他们认为个人健康数据对公共卫生研究有用，不敏感，并且相信在分享后他们的身份将保持匿名，那么他们更愿意与研究人员分享个人健康数据。我们还发现，人们的年龄、性别、职业和居住地可能与他们对个人健康数据共享的看法有关。
