JMIR Publications

ABSTRACT

Registries have long been a cornerstone of medical research and public health, providing systematically collected data on diseases, treatments, and health outcomes. However, in the era of digital health, we argue that the traditional model of standalone registries needs reconsideration given the context of increasingly digitized and interoperable health data ecosystems. Unless registries evolve to embrace embedded, standards-based data services, operating across interoperable infrastructure, they will become obsolete while digitalization is reshaping how data can be collected, shared and utilized. In this Viewpoint, we recount how the present health data ecosystem came to be and what role registries have come to play therein. Following that, we show how recent regulatory initiatives such as the Trusted Exchange Framework and Common Agreement in the United States or the European Health Data Space Regulation signal a shift towards cross-network health information exchange, promoting patient-centric data within electronic health record systems. We further illustrate how electronic health records are consequently set to evolve into information hubs, acting as the primary gateway for individuals through which they may access and control their personal health data spread throughout the health data ecosystem. This, in turn, might stimulate the creation of digital twins and continuous learning health systems in practice. Following this line of thought, we discuss the opportunities and challenges of this ongoing transformation of the health data ecosystem. Ultimately, we propose that next-generation registries need to be designed as dynamic, service-oriented software stacks for research, leveraging the common data infrastructures that are currently being established around the world. Given the points raised in this Viewpoint, we invite health care professionals and researchers alike to equally rethink the role that registries should play within the globally emerging interconnected health data ecosystems and contribute their findings.