A Global Analysis of Approaches to Sharing Clinical Data with Patients

Engaging patients in their care has become a topic of increasing importance, and enabling patients to have access to their clinical data is a key aspect of such engagement. To investigate on an international scale the current state of approaches for providing patients with access to their own clinical information, individuals from 16 countries, across six continents, participated in cross-sectional semi-structured interviews. Interview questions focused on social and cultural influences that affected patient engagement activities, government support for current and planned initiatives, data ownership models, and technical issues. Substantive initiatives for providing information to patients in the majority of countries interviewed are present; however, these initiatives were diverse in nature and stage of implementation. Efforts to improve patient access to data are active on a global-scale. There are many open questions about best practices and much can be learned by adopting an international perspective to guide future implementation efforts.