On January 11, 2019 the Agency for Healthcare Research and Quality (AHRQ) released a draft Addendum to the Third Edition of Registries for Evaluating Patient Outcomes: A User’s Guide called Tool and Technologies for Registry Interoperability. AHRQ has long written about registries – largely from a research standpoint – and I have been following this from afar for some time. This new guide is focused on helping those who both create and use registries understand the issue surrounding leveraging external data to improve registry completeness, accuracy, and usefulness.
This report covers lots of ground and does a good job of summarizing important subtopics. Each chapter is overflowing with footnotes and sources. In Chapter 1, AHRQ reviews the context for registries today within the notion of a learning health system, and then quickly jumps into a useful discussion of interoperability barriers and problems. Many research-oriented registries are narrowly focused on a specific issue or problem; AHRQ envisions a more interoperable set of registries that can create a more integrated “national research infrastructure.”