Establishing a national traumatic brain injury information system based upon a unified data set

In alliance with payers and persons with disabilities, rehabilitation professionals can create an outcome data system for traumatic brain injury (TBI) that will provide the knowledge necessary to improve the effectiveness and cost-effectiveness of rehabilitation programs. A nationwide TBI data system is needed to identify reasonably homogeneous subgroups given different treatments whose outcomes can be meaningfully compared. The advantages of a national outcome data system for gathering and analyzing this information include large sample sizes, objective assessment, measurement across the whole continuum of care, and adequate severity adjusters. Proposed methods and content for such a database are described, for reflecting general functional levels of clients along the continuum of care: acute care, TBI rehabilitation programs, and the community. Tools proposed are brief, have proven reliability and validity, and measure characteristics common to traumatically brain injured individuals. Possible data analysis approaches for a National Information System (database) dedicated to TBI are described for discussion within the rehabilitation community.