Centering patient perspectives to achieve injury-related health equity in trauma care systems: Improving trauma registry data

Abstract

BackgroundLimitations in current data collection systems for patients who experience traumatic injury limit researchers’ ability to identify and address disparities in injury and outcomes. We sought to develop and test a patient-centered data-collection system for equity-related data indicators that was acceptable to racially and ethnically diverse patients being treated for traumatic injuries. MethodsHealth equity indicators included in this study were race and ethnicity, language, education, employment, housing, and injury address. We conducted interviews with 245 racially and ethnically diverse trauma patients who were treated at a level-1 trauma center in the US in 2019–2020. We first interviewed 136 patients to develop a culturally resonant process and options for the health equity indicators to be added to a revised data collection system for the electronic medical record. English and Spanish interviews were audio-recorded and transcribed verbatim; qualitative analysis was used to assess patient preferences. We then pilot tested the revised data collection system with an additional 109 trauma patients to assess acceptability. Acceptability was defined as having more than 95% of participants self-identify with one of the proposed options for race/ethnicity, language, education, employment, and housing. Injury address (to identify geographic disparities) was pre-defined as acceptable if at least 85% of participants could identify exact address, cross streets, a landmark or business, or zip code of injury. ResultsA revised data collection system, including culturally resonant indicators and a process to be used by patient registrars to collect health equity data, was pilot tested, refined, and considered acceptable. Culturally resonant question phrasing/answer options for race/ethnicity, language, education, employment, housing status, and injury address were identified as acceptable. ConclusionsWe identified a patient-centered data collection system for health equity measures with racially and ethnically diverse patients who have experienced traumatic injury. This system has the potential to increase data quality and accuracy, which is critical to quality improvement efforts and for researchers seeking to identify groups most impacted by racism and other structural barriers to equitable health outcomes and effective intervention points.