[Electronic health records and biomedical research]

The rapid progress in Web technology has led to the multiplication of health and research records for any given patient. Initiatives such as the personal medical record or the communicating cancer communicable records have recently been introduced. However, their primary aim is not for biomedical research. Several international groups of researchers are analyzing the appropriate role of the electronic health record as a support to biomedical research. The need to complete several distinct records for a given patient is a limiting factor, in view of the lack of medical and paramedical resources and the rising quality demands for both medical care and biomedical research. The impediments to "secondary reuse" of clinical data stored in electronic health records for biomedical research purposes are statutory, organizational, and technical. The international Integrating the Healthcare Enterprise (IHE) initiative has proposed a promising approach that uses an integration profile known as a Retrieve Form for Data Capture (RFD). A joint project by the North American Association of Cancer Registries and the Centers for Disease Control has made possible the automated transmission of pathology reports to the registries and thus limited the need for registry technicians to come copy these forms at the hospital.