Towards effective data sharing in ophthalmology: data standardization and data privacy

The purpose of this review is to provide an overview of updates in data standardization and data privacy in ophthalmology. These topics represent two key aspects of medical information sharing and are important knowledge areas given trends in data-driven healthcare.

Standardization and privacy can be seen as complementary aspects that pertain to data sharing. Standardization promotes the ease and efficacy through which data is shared. Privacy considerations ensure that data sharing is appropriate and sufficiently controlled. There is active development in both areas, including government regulations and common data models to advance standardization, and application of technologies such as blockchain and synthetic data to help tackle privacy issues. These advancements have seen use in ophthalmology, but there are areas where further work is required.

Information sharing is fundamental to both research and care delivery, and standardization/privacy are key constituent considerations. Therefore, widespread engagement with, and development of, data standardization and privacy ecosystems stand to offer great benefit to ophthalmology.