ABSTRACT

Traumatic brain injury (TBI) affects approximately 1.7 million Americans annually, and over 5.3 million persons in the U.S. are living with a TBI-related disability, which costs about $60 billion annually. TBI is a multi-dimensional injury that requires multi-disciplinary care teams to coordinate and deliver care. Due to the unique symptoms and outcomes of each TBI patient, rehabilitation must be highly tailored and individualized. Clinicians want to know if their treatments for a specific patient are effective for that patient. The goal of this research is to determine data and processes needed for clinical decision support tools that would facilitate rehabilitation professional teams in tracking the short-term and long-term recovery of TBI survivors in a timely and effective manner. Specifically, this dissertation’s overarching goals are to: 1) map the detailed processes of TBI rehabilitation with providers at each process stage; 2) define the roles of each provider and their expertise; 3) specify the information needs for each provider and the information flows in the process over time; and 4) consider future technological advances that might benefit care delivery coordination in this process. A functional needs assessment was used to determine the needs of professional care providers involved in the rehabilitation process for adult civilian TBI survivors via semi-structured interviews (n = 32).

The findings from this work generated process maps, which were useful in understanding team coordination, and highlighted the information handoffs that occur at various temporal and organizational levels of the provider coordination (e.g. shift-change level, healthcare system transfer level). Content analysis identified process characteristics, such as differences in TBI care in athletic programs versus purely clinical settings. This analysis also identified and defined over 30 key professional roles, their expertise, and their information needs. Provider role definition highlighted the criticality of multi-disciplinary teamwork due to the need for different perspectives and consistency of treatment. Thus, the coordination and communication in TBI may need to be even more robust than in some other disease populations. While each professional role in TBI rehabilitation varies in their information needs, there was a general consensus in wanting to know “everything” about the patient. Certain information types and formats are prioritized differently for each TBI professional. All professionals want timely information, although their time-scales for what is considered “timely” varied. In general, the earlier the patient is in the care continuum, the more frequent information updates (i.e., multiple updates per hour or day) for providers are desired/necessary. Finally, barriers and facilitators to care were identified. The findings from two use cases informed information architectures for building a system that can house the various data formats of TBI professionals’ information needs and support their sensemaking and coordination with other providers.

Recommendations for improvement and areas for future work include telehealth and telemedicine interventions, automated patient data collection, information system (re)design, resource allocation analysis, and macro-ergonomic handoff research. Just as no one clinical discipline "owns" TBI care, the numerous functional needs identified in this study cannot be addressed by one discipline or field. There are numerous research and development opportunities for persons from multiple disciplines and fields, especially engineering, will join the "team" in improving the complex system that is TBI rehabilitation.