From jargon to clarity On patient access to electronic health records and patient-friendly terminology

Patient access to electronic health records (EHRs) is facilitated by patient portals and personal health record systems. However, medical data are difficult to comprehend. In this thesis, we systematically reviewed systematic reviews on patient access to records and elaborated upon an adoption framework to include patients as users of EHRs. Furthermore, we showed that a tool to clarify medical terms in free-text EHR content to patients was appreciated by patients even when the coverage and quality of the clarifications was limited. Additionally, we developed and validated a novel approach to generate clarifications of medical diagnoses that increases the coverage of diagnoses by clarifications significantly. Finally, we implemented the clarifications into a hospital patient portal problem list and found that the clarifications were actually used and that most of the clarifications were considered to be of good quality by actual patient portal users. The presented work contributes to the (re)use of EHRs by patients and clarifying medical data to laymen.