What do patients consider sensitive health information? A cross-sectional survey of national patient portal users

Introduction Patient-accessible electronic health records (PAEHRs) offer benefits, such as supporting self-management and care engagement. However, some patients, particularly those with mental health conditions, might experience negative emotions such as worry when reading unexpected or sensitive information in their PAEHRs. Methods A web-based survey of 4459 respondents distributed via the Finnish national patient portal included multiple-choice and open-ended questions. Respondents consisted of two patient groups who had received care either for 1) mental health or 2) other conditions. Inductive content analysis was performed to explore the kind of information that was perceived as sensitive in the PAEHR. Associations between sociodemographic factors including the type of care and reporting health information as sensitive were calculated via the multivariable binary logistic regression analysis. Results Mental health (61.3%), and intimate health (8.3%) were the most frequently mentioned as especially sensitive types of information among respondents, who also stressed that the sensitive nature of the health information depended on the context. Within the mental health information type, therapy or treatment was most often mentioned (3.5%) as sensitive. Respondents who had received mental health care were significantly more likely to perceive certain information as sensitive (53.2%) than other patients (28.8%; Adjusted OR=2.783, 95% CI=[2.333, 3.319], p<0.001). Conclusions This study delves into the sensitive character of mental health information within PAEHR. The sensitivity of information also depends on the consequences for the patients when data will be used in another context. Documenting sensitive information carefully and safeguarding it is recommended to maintain trust in electronic health records and healthcare.