Goals of SPIN
- To create a Web-based system capable of searching existing electronic databases to locate human specimens and associated clinical and pathologic data needed for cancer research
- To enable investigators to query the system and receive a report with data in a structured format
- To establish protocols for sharing data that protect patient privacy and confidentiality
See more: Shared Pathology Informatics Network
http://spin.nci.nih.gov/
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
Accomplishments and Current Status of Project
Grants were funded for SPIN in 2001. Four working committees were formed:
- The coordinating committee with general responsibility for overall planning of the Network and executing its development
- The technology committee to develop the software, protocols, data exchange standards and security strategies to respond to network queries and to transfer information in a way that serves the purposes of researchers without compromising patient confidentiality
- The content committee that assesses that types of information that can be feasibly and usefully accessed within the Network sites
- The confidentiality committee that will develop protocols for sharing data in a manner that is legally, socially and ethically satisfactory and that will be submitted for approval by the Institutional Review Board (IRBs) of the Network sites
Below is a list of investigators, consultants, sites and others who hold the awards and make up SPIN.
Principal Investigators:
Dr. Clem McDonald
Director, Regenstrief Institute for Health Care
Distinguished Professor of Medicine
Indiana University School of Medicine
1050 Wishard Blvd RG5
Indianapolis IN 46202-2872
URL: www.regenstrief.org
Dr. Isaac Kohane,
Director, Informatics Program
Children's Hospital
300 Longwood Avenue
Enders 5
Boston, MA 02115
www.chip.org
Subcontract Principal Investigators:
Michael J. Becich, M.D., Ph.D.
Department of Pathology
Room C-918.2 PUH
University of Pittsburgh School of Medicine
200 Lothrop Street
Pittsburgh, PA 15213-2582
Email: becich+@pitt.edu
Jonathan Braun, M.D., Ph.D.
Chairman of Department of Pathology and Laboratory Medicine
UCLA Medical Center
Box 951732, 13-222 CHS
Los Angeles, CA 90095-1732
Email: jbraun@mednet.ucla.edu
NCI Program Director:
Jules J. Berman, Ph.D., M.D.
Program Director, Pathology Informatics
Cancer Diagnosis Program, DCTD, NCI, NIH
EPN - Room 6028
6130 Executive Blvd.
Rockville, MD 20892
Phone: 301-496-7147
FAX: 301-402-7819
Email: bermanj@mail.nih.gov
Consultant:
Kenneth H. Buetow, Ph.D.
Director, NCI Center for Bioinformatics
8424 Helgerman Court
Bethesda, MD 20892
and
Chief, Laboratory of Population Genetics
41 Library Drive, Building 41, Room D702D
Bethesda, MD 20892
Network Sites:
- Beth Israel Deaconess Hospital, Boston, MA
- Brigham & Women's Hospital, Boston, MA
- Children's Hospital, Boston, MA
- Clarian Health - Methodist Hospital, Indianapolis, IN
- Community Hospitals Indianapolis, Indianapolis, IN
- Indiana State Department of Health, Indianapolis
- Massachusetts General Hospital, Boston, MA
- Regenstrief Institute, Indianapolis, IN
- St. Francis Hospital and Health Centers, Beech Grove, IN
- St. Vincent Hospitals and Health Services, Indianapolis, IN
- UCLA Affiliate Hospitals, Los Angeles, CA
- University of Pittsburgh, Pittsburgh, PA
- Wishard Memorial Hospital, Indianapolis, IN
Plans of the Project
- During years 1 and 2, the participants will select the categories of data that can feasibly be retrieved in response to research queries.
- The group will create ways to map medical concepts contained in surgical pathology reports to a standard medical terminology in years 2-3.5. This will permit the relevant information contained in surgical pathology reports (e.g. names of diseases and associated clinical information) to be retrieved regardless of the varying terminologies used in the different Network institutions.
- From the beginning of the project, significant effort will be devoted to constructing the system that will allow useful patient-related information to be transmitted through the Internet in a manner that is compliant with applicable local, state and federal regulations and that protects patient privacy.
Section Last Updated: 07/25/07
