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Informatics: what is it and how can it help me?
Stuart Bell
The National Cancer Research Institute (NCRI), and its industry, charity and government partners are funders of the NCRI Informatics Initiative. The term “Informatics” merely refers to the process of collecting, managing and sharing information.
The majority of medical researchfunding organisations now believe that making research data widely and freely available will allow it to be used to the maximum extent possible, thereby improving the understanding, diagnosis, prevention and treatment of disease, as well as helping to avoid the duplication of research effort. The NCRI Informatics Initiative is assisting in this by encouraging datasharing, and through the development of the NCRI Oncology Information Exchange (ONIX) IT Infrastructure. The NCRI ONIX contains a portal that will be connected to many different cancer research resources and datasets, that will allow users to search through vast cancer relevant resources pertinent to their own research agenda.
The NCRI Informatics Initiative has co-ordinated an Imaging and Pathology (I&P) demonstrator project (involving Prof. Phil Quirke and Dr. Darren Treanor of the University of Leeds, Dr. Gina Brown of the Royal Marsden Hospital and Prof. David Gavaghan of the University of Oxford) to explore how informatics could help support decision making in cancer treatment by integrating MRI information with macroscopic and microscopy data obtained from a colorectal cancer clinical trial. The system developed by the I&P researchers allows images of patients and associated meta-data (the descriptive terms applied to the data available to make it more easily searched) to be searchable according to specific criteria and demonstrates that using informatics allows prognostic and diagnostic features to be related to and linked to diagnostic and predictive profiles.
Quote1...multiple-modality images can be integrated into data sets Quote2
and databases and shared and accessed by other users... 
The I&P project demonstrated that multiple-modality images can be integrated into data sets and databases and shared and accessed by other users, in a way that is beneficial in clinical terms (allowing better pre-surgical decision-making regarding the extent of resection necessary to provide clear margins), but also safe and secure in terms of patient confidentiality. The project also developed algorithms to allow image manipulation, superimposition of multiple image types and virtual 3-D reconstruction of resected specimens. The I&P project has now been extended into a trans-Atlantic co-operation with our US colleagues at the NCI, to explore the meaningful exchange of clinical images over the long-term.
Many of the main medical research funders in the UK are now including in their funding awards an obligation to share the data generated from that funding. This obligation to share data will certainly become more widespread and more routine in future. Many organisations (including the NCRI Informatics Initiative) are working together with the medical and scientific communities to assist them with their datasharing responsibilities.
Unlike the US, in the UK currently there is no central biomedical image archive that individual researchers or research groups can upload images to. However, there are smaller groups of pathologists and radiologists working in this area in the UK, and in future the sharing of imaging data is going to take on greater significance. The NCRI Informatics Unit recommends that images currently being collected are stored and annotated in accordance with internationally-accepted standards to allow such images to be shared retrospectively. Information on how to store scientific image data to an agreed standard, and in a suitable format, to facilitate data-sharing can be found in the ‘InfoMatrix’ on the website of the NCRI Informatics Initiative. The standards and tools contained within the InfoMatrix are applicable to all disease areas and are not restricted to cancer. The NCRI Informatics Initiative website also includes links to other organisations and projects which will interest pathologists, and demonstrate the practicalities of data-sharing.
Early prototypes of the NCRI ONIX have been tested by representatives of the medical research community and further refinements are ongoing in light of their feedback. The first release of the NCRI ONIX is scheduled for January 2009.
Stuart Bell
NCRI Informatics Initiative
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