New research from Avalere Health LLC illuminates a number of key barriers to the collection of critical data by medical device registries. The report, Innovative Approaches to Accessing, Extracting, and Aggregating Electronic Health Data: Experience From Five U.S. Medical Device Registries, was based on interviews with the featured registries, and an analysis of the findings, to identify common themes and innovative practices.
The report, funded by The Pew Charitable Trusts, identifies challenges that medical device registries face in the collection, extraction, and aggregation of data, including:
- Difficulty sharing information between electronic health record platforms.
- A lack of commonly adopted data standards.
- Concerns about data security, patient privacy, and protecting the health of human subjects.
The research also examines innovative ways that registries are meeting these challenges and delineates important lessons learned and inventive practices that could potentially be disseminated to other registry developers, researchers, policymakers, and other interested parties. Public policy recommendations that may address barriers to data access, extraction, and aggregation—and encourage innovative practices in the registry space—are also included.