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
Overview
The Shared Pathology Informatics Network (SPIN) originally was funded by the National Cancer Institute to link the vast collections of human specimens that are infrequently shared for cancer research. SPIN sets forth the institutional agreements and distributed database architecture to grant institutional autonomy and protect patient privacy according to HIPAA regulations. SPIN has successfully completed a feasibility study involving seven independent medical centers sharing millions of human specimens.
Using a peer-to-peer architecture, institutions become SPIN members (nodes) by securing institutional review board (IRB) approvals and deploying the SPIN software. At any time, an institution can withdraw from the network without leaving their data behind or disabling the network. SPIN nodes can serve as peers or supernodes to query local databases or networks of child nodes, respectively.
SPIN allows institutions to expose de-identified pathology reports while keeping corresponding reports containing Protected Health Information (PHI) disconnected from the Internet. A randomly generated unique identifier is assigned to both the PHI and de-identified reports in a locally controlled codebook. The machine storing the codebook is disconnected from the Internet and protected according to each participating site's policies. The resulting solution is flexible and compliant with HIPAA regulations.
SPIN provides three levels of increasing access commensurate with investigator credentials and IRB approvals. First, feasibility studies are conducted using a statistical level query that returns only aggregated results. Second, individual de-identified cases are selected by investigators certified by one of the participating institutions. The third level allows requests for specimens and clinical data that must be approved by the institution storing the requested data.