White Mothers’ Willingness to Share Personal Health Data: Survey Results and Future Research Implication

The objective of this research is to understand white mothers’ willingness to share their personal health data (PHD). Studies have shown that participants are willing to share their data when there is a benefit to do so, and when their data are kept private and secure. We recruited a representative sample of white mothers with children without disabilities from an opt-in panel to assess their willingness to share their PHD. We surveyed these mothers on their attitudes and beliefs and trust in data sharing, data sharing thru devices, internet use and interest in future research, and questions related to caregivers and their children. 15 questions out of 51 in the survey were selected for analysis. We found that mothers’ general health was associated with mothers’ desire to keep their PHD anonymous. The income level, health status of the youngest child, and use of internet were associated with respondents’ use of patient portal. The age of child was associated with mothers’ willingness to share their health information anonymously with researchers. We analyzed the implication of these findings on the ongoing project and for future research..