Creating a framework for data sharing in cochlear implant research.

ABSTRACT

OBJECTIVES: To summarize the development process of a national database that was designed to facilitate communication and collaboration, improve care, and create a framework for aggregate data sharing in cochlear implant (CI) research. METHODS: A group of nationally represented, multidisciplinary CI providers cooperated to define a standard set of data elements to incorporate into a database built by them in association with a group of computer scientists and software designers. CI centers across the USA, then, joined the non-profit Auditory Implant Initiative to use the database for their own clinical purposes and to help contribute to the national de-identified dataset for research and analytics. RESULTS: Approximately 12 months after the full release of the database, clinical information on 373 patients has been entered from 17 different CI centers representing 61 hearing professionals. A blend of six academic, seven private, and four non-profit CI centers participated in this phase of the data sharing network. DISCUSSION: The adoption of a single, standardized database by 17 centers throughout the USA has begun a framework for data sharing in CI research. Future steps include (1) expanding adoption, (2) scaling the database to include more patients, (3) streamlining the legal hurdles required for adoption, and (4) integrating the database with other software platforms (e.g. electronic health records, processors). CONCLUSION: A standardized clinical outcomes database that is utilized by a growing network of CI centers can help strengthen research through aggregate data sharing.