Leveraging Health Information Exchange to Build a Patient Registry for Traumatic Brain Injury (TBI), Spinal Cord Injury (SCI) and Stroke

conceptual illustration of interconnected points

Traumatic brain injury (TBI) is one of the most prevalent and severely disabling neurological disorders in the US. Nationwide, 1.7 million people experience TBI each year of which 3 to 5 million live with a TBI-related disability. Additionally, deaths due to TBI represent about a third of all injury-related deaths in the US. As such, TBI as a condition presents significant economic burden on society with over $63 billion in lifetime costs due to loss of productivity and an additional $13 billion in medical costs. While the relevance of TBI to public health is recognized, the public health consequences of TBI are currently woefully underappreciated. Patients and the families of those who suffer from TBI live with psychological consequences of TBI that have hidden costs such as the inability to hold down work, disinhibited (often aggressive or easily agitated) behavior, and altered mood states. TBI has a higher incidence among vulnerable populations and many of these people enter a downward spiral of head injury associated with altered behavior, alcohol, and further head injuries. Therefore long-term care is crucial in the management of TBI.

However, insurance and the healthcare industry treat TBI as an acute event; there is a perception that once TBI itself is treated, no more treatment is necessary following a brief period of rehab. In fact, TBI meets all criteria in the WHO definition of a chronic illness: it is permanent, irreversible, requires special training by rehab, and requires long-term supervision and care. As such, TBI should be treated as a chronic condition and data on the long-term outcomes and care process is needed in order to study them. The predominant source of TBI surveillance comes from trauma registries which collect only the acute event and currently, there exists a gap in terms of long-term data. We addressed this data gap by creating a patient registry from electronic health records (EHRs).

Spinal cord injury (SCI) and stroke share characteristics related to long-term outcomes with TBI. Although, SCI is rare with about 17,000 cases a year, the most common outcome of SCI is the incomplete paralysis of all four limbs with less than 1% of patients achieving complete neurological recovery at discharge. On the other hand, Stroke is the leading preventable cause of disability in the US with 800,000 Americans suffering from stroke each year. While not TBI, stroke does result in injury to the brain that may be permanent. Together, TBI, SCI, and stroke result in neurological damage that often needs long-term care and supervision. As such, our patient registry focuses on all three conditions while addressing the data gap that currently exists.

Since our registry is based on EHR data, it enables the study of patient outcomes over several years after the event. Further, no additional resources were expended to create the registry since all the information is collected in the process of routine care. Ultimately, the TBI, SCI, and Stroke registry serves as an excellent public health informatics resource that enables surveillance while supporting outcomes research as well.

Regenstrief Center

  • Center for Biomedical Informatics