Design of a personal health record and health knowledge sharing system using IHE-XDS and OWL

Personal Health Record systems (PHRs) provide opportunities for patients to access their own PHR. However, PHRs are teeming with medical terminologies, such as disease and symptom names, etc. Patients need readily understandable and useful health knowledge in addition to their records in order to enhance their self-care ability. This study describes a Personal Health Record and Health Knowledge Sharing System (PHR&HKS) whereby users not only can maintain and import their PHR, but also can collate useful health Web resources that are related to their personal diseases. Furthermore, they can share the collated Web resources with any user with the same diseases and vice versa. To fulfill these objectives, IHE Cross-Enterprise Document Sharing (XDS) architecture was adopted to share and integrate the PHR. A registry ontology, consisting of part of the XDS document metadata attributes, the ICD-9-CM code, and part of the Dublin Core Metadata Element Set (DCMES), was created to enhance the health knowledge collating and sharing functions. The system was then tested and evaluated by 30 users. Among these individuals, 24 (81 %) held positive views on the ease of use and usefulness of the system while the remainder, who held either neutral (14 %) or negative (5 %) attitudes, were identified as individuals who were somewhat unwilling to maintain any PHR or share any information with others.