Motivation
For decades, health information systems have been rapidly deployed across the nation serving a wide range of clinical, research, and public health applications. Because these efforts reflect the various needs and prerogatives of each institution, real-time query and aggregation of heterogeneous databases has become increasingly difficult. As a result, few investigators are able to obtain the sample sizes necessary for robust analysis.
Approach
SPIN has addressed these challenges with five principles:
(1) Ensure full autonomy for care providers participating with peer institutions
(2) Reassert care provider IRBs as stewards of patient privacy and research benefit
(3) Protect patient privacy using de-identification toolkits
(4) Provide investigators with real-time aggregated views of de-identified data
(5) Develop software to help institutions participate quickly