International perspectives on sharing clinical data with patients

• International subjects were interviewed about sharing clinical information with patients.
• Enabling patient access to data is occurring on an international scale.
• There is considerable variability of sharing and access across countries.
• Globally, efforts to improve patient access to data are growing.

ObjectiveEngaging 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. We investigated, on an international scale, the current state of approaches for providing patients with access to their own clinical information.MethodsIndividuals from 28 countries were invited to participate in a cross-sectional semi-structured interview. 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.ResultsInterviews were conducted with individuals from 16 countries representing six continents. Respondents reported substantive initiatives for providing information to patients in the majority of countries interviewed. These initiatives were diverse in nature and stage of implementation.DiscussionEnabling patient access to data is occurring on an international scale. There is considerable variability in the level of maturity, the degree of government involvement, the technical infrastructure, and the plans for future development across the world. As informaticians, we are still in the early stages of deploying patient engagement technologies and have yet to identify optimal strategies in this arena.ConclusionEfforts 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.