Patient Preferences and Perspectives on Accessing Their Medical Records

Background: Personal health record platforms and patient portals have the potential to empower patients by providing access to health records, but not all patients may be interested in this. The purpose of this study was to explore inpatients' opinions on their hospital paper medical records after they had incidental access to them. Methods: A survey and observational study were conducted in the computed tomography department at a large academic hospital. Patients in the computed tomography hallway were left with their paper records and either started reading them or not. Results: Of 174 patients receiving the survey, 102 returned the questionnaire (59% response rate); two were excluded. Among the 100 included patients, 65 read their records, and 35 did not; 37.1% (13/35) nonreaders indicated interest to access their records but did not know they had the legal right. The physician's notes was the section that most patients read (n = 35, 53.8%) followed by the laboratory reports (n = 31, 47.7%) and nurse's notes (n = 29, 44.6%). Overall, 70.8% (46/65) of readers found their records easy to understand, and most found their records correct (64.4%) or complete (58.5%) and did not find anything unexpected (63.1%) or distressing (66.2%). However, a significant minority found errors in their records (7.7%) including missing test results, medications, and a wrong birthday. According to multivariate analysis, being female (odds ratio [OR] = 2.8; 95% confidence interval [CI], 1.0-8.0), younger than 60 years (OR = 3.0; 95% CI, 1.2-8.0), and having a higher level of education (OR = 3.9; 95% CI, 1.4-10.8) predicted readership. Conclusion: A surprisingly high number of patients are still unaware of their legal right to access their health record. Predictors for access suggest a "social divide'' in motivation and ability to access health records.