Accepted for/Published in: JMIR Human Factors
Date Submitted: Jul 10, 2024
Date Accepted: Jul 10, 2025
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Public attitudes and predictors of public awareness of digital information sharing for health research: A cross-sectional study in Japan
ABSTRACT
Background:
As digital technology advances, health-related data can be scientifically analyzed to predict illnesses. Analysis of data collected during health examinations and health status monitoring, along with data collected during medical care delivery, can contribute to the public good. Understanding citizens’ attitudes and predictors of digital data sharing is critical in promoting data-driven research.
Objective:
To determine the public acceptability of data sharing and the attitudes and influencing factors toward data sharing.
Methods:
A cross-sectional online survey was conducted from November 11–18, 2023 in Japan. We analyzed 1,000 valid responses. Four factors were investigated as predictors of participants’ attitudes toward sharing digital health information for social benefit: 1) individual sociodemographic characteristics, 2) types of health information shared, 3) data sharing concerns, and 4) reasonable access and control over the data. The association of these factors with the respondents’ willingness to share was analyzed. We summarized demographic characteristics based on gender, age group, affiliated educational institution, and education history/degree. Continuous variables are expressed as means ± standard error (SD). Logistic regression was used to analyze the association between attitudes and acceptability of sharing health digital information and predictors Factors such as participants' willingness to share various data types, preferences regarding data access and control, underlying concerns, motivations for data sharing, demographic characteristics, and eHealth literacy.
Results:
The mean age of the participants and the standard deviation was 52.8 ± 19.8 years. We identified the factors influencing respondents’ willingness to share a wide range of personal digital information about health in Japan, including information in medical records, biobank samples, and digitized social communication. Results showed that approximately 70% of Japanese participants were willing to share digital information about their health. The motives associated with positive willingness to share digital information were helping future patients, (OR 2.5860 95％CI 1.8849–3.5481 P＜.0001）, receiving their own results, (OR 2.2261 95％CI 1.6243–3.0509 P＜.0001）, and receiving financial benefits. (OR 1.8059 95％CI 1.2630–2.5822 P=.0012). Concerns associated with negative willingness to share information were data being used for unethical projects (OR 0.5104 95％CI 0.5104–0.722 P＜.0001）and agreeing to contract terms that they did not fully understand (OR 0.7114 95％CI 0.5228-0.9681 P=.0303）. Compared with men, women were less willing to share information (OR 0.722 95% CI 0.539–0.967 P=0287) and the higher the e-health literacy, the more positive the willingness to share digital information. ( OR 1.0680 95％CI 1.0450–1.0920 P＜.0001）.
Conclusions:
This study found differences in the types of data that individuals are willing to share. Therefore, the significance of sharing data should be fully communicated to individuals to motivate them to share their data and contribute to their overall health. Clinical Trial: Since it is an online questionnaire survey, registration is not required.
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