Description of SPIN

The Shared Pathology Informatics Network (SPIN) will use state-of-the-art informatics techniques to establish an Internet-based virtual database that will allow investigators to locate appropriate human tissue specimens for their research. The SPIN will develop software to give researchers limited access to deidentified patient data. Accessible data will be associated with archived tissue specimens. Institutions will have full control over any data leaving their sites, and there will be no centralized database that stores SPIN data.

The need for this system has been fueled by the growing use of tissues, diagnostic specimens, and their related clinical data in modern biomedical research. There is a wealth of archived tissue, and most pathology laboratories have at least ten years of pathology reports stored electronically. Searchable databases with patient data exist at hospitals and medical institutions. Increasingly sophisticated software tools are now available that can facilitate communications among disparate computer systems, even among those that employ different architectures and search strategies. This combination of the need for tissue and the opportunities provided by new internet technologies led the NCI to initiate SPIN.

The SPIN is a 5 year project (2001-2006) that will employ Internet technology and these software tools to process researcher-initiated queries, drawing information from multiple institutional databases. The systems being developed:

• will allow searches of the archived information in multiple institutions
• strip patient records of all identifiers
• encrypt patient information for security during transmission

Challenges in addition to the technical hurdle of secure transmission of information stored in different institutions include:

• the ability to accurately identify required comparable data that has been stored in multiple formats, including free text
• developing common data elements to map to the information
• designing the structure of the report that responds to the query