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
Deployed uses of SPIN technology
@Andy: overview
for General Clinical Research
@Andy: shrine paragraph and links
for Cancer Research Requiring Human Specimens
Many scientists are calling for a closer connection between research and routine care delivery. Human specimens are routinely collected yet infrequently shared for research studies such as biomarker discovery and validation. While many reports suggest that access to well-characterized human tissues represents a valuable research resource in the post-genomic era, few studies have access to tissue quantities large enough for high- throughput experimentation. Similarly, the related clinical information remains invaluable yet oftentimes inaccessible to investigators. To address these needs, SPIN enables the Pathology Specimen Locator to support translational research activities which require access to human specimens and related clinical information.
for Real-Time Syndromic Biosurveillance
Modern biosurveillance applications look for unusual patterns of disease with respect to geographic regions and seasonal trends. Using SPIN, our AEGIS system provides near real-time situational awareness for public health departments. SPIN enables patient de-identification and reasserts hospitals as stewards of patient privacy while allowing emergency investigations to occur on only those cases which signal public health outbreaks.