Improving transparency and empowerment for cancer patients by accessing their full online personal medical records

Online medical records are becoming increasingly accessible to patients, but real-time access could increase anxiety in cancer patients whose prognosis may be life-threatening. This study assessed cancer patients' experience of full access to medical records using an application (app), and the impact on their anxiety.

We conducted a cross-sectional study in a comprehensive cancer center in June 2023. Patients completed a paper-based questionnaire investigating their perceptions of the app (e.g., usefulness, information available, access to medical records), anxiety (HADS), quality of life (EQ5D) and health literacy (HLQ). Factors associated with access to medical records were analyzed adjusting for patients' characteristics.

340/560 patients completed the questionnaire. For the 10% who lacked access to the app, 80.8% wanted access. Overall, 94.9% of users were satisfied with the app. Frequent users found information easy to access (p<0.001), useful (p=0.028), and understandable (p=0.022). They felt it improved their care (p=0.011), involvement (p=0.006), discussions with doctors (p=0.044) and loved ones (p=0.046), understanding of their illness (p=0.035). Access was more frequent among patients under treatment (OR=2.32, p=0.007), those searching health information online (OR=3.8, p<0.001), and those who found information easily (OR=2.68, p=0.002). Anxiety about the medical information, patients' level of anxiety (HADS), QOL and health literacy were not associated with frequency of use.

Patients were satisfied with the app and real-time access to medical records did not increase their anxiety. Few patients regretted accessing their medical records. As patients become more informed and involved, doctors will have to adapt the way they communicate.