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Biomedical informatics, when conscientiously developed and applied to help patients, can lead to identification of health inequities and possible ways to address them. We describe a new sub-field called “equiformatics”, through which we can consciously develop datasets, tools, models, and knowledge to address these inequalities. This dissertation seeks to explore examples of racial disparities in medical disorders that disproportionately impact African Americans (AA), and demonstrate the feasibility and value of developing tools to address these health inequities.In Unraveling Racial Disparities in Asthma Emergency Department Visits Using Electronic Healthcare Records and Machine Learning, we found disparities leading to increased number of emergency department visits for asthmatic AA. We found a disproportionate correlation between asthma exacerbations and exposures to pollen and mold among AA compared to European Americans (EA). Similar disproportions showed up in End-Stage Kidney Disease (ESKD), where AA received fewer kidney transplants and remained on hemodialysis for longer periods of time. Hepatitis C Virus (HCV) exposed kidneys from deceased donors may present an opportunity to ameliorate some disparities understand the increased risks involved. To assess patients' values and preferences for ESKD-related health states and kidney transplantation, we undertook a study using a utility assessment platform we developed to explore racial/ethnic differences in valuation of ESKD-related health states.In An Automated Tool for Health Utility Assessments: The Gambler II, we developed The Gambler, an authoring platform to perform health utility assessments (HUA) using various methods, including the standard gamble, time tradeoff, and visual analog scale. We demonstrated the feasibility of this platform through a study eliciting health utilities complications of type II diabetes mellitus: diabetic retinopathy, diabetic neuropathy, and diabetic foot infection requiring transmetatarsal amputation. This study acquired utilities from 55 participants reporting that the video instructions and health state video clips improved the HUA experience. This tool demonstrated the feasibility of implementing an accessible, and understandable web-based HUA tool.In Evaluating Patients’ Receptiveness for HCV-Exposed Kidney Transplants through Exemplars, we assessed patients’ utilities for ESKD-related health states: hemodialysis, kidney transplant, and transplantation with HCV-viremic kidney. During the utility assessments, patients viewed videos of patient actor exemplars describing health states. We created separate film clips for each of the three health states using AA and EA men and women exemplars, a separate film clip for each combination of gender, race, and health state. We hypothesized that patient knowledge about these ESKD-related health states would increase following the viewing of the health-state description video clips, and that increases in knowledge would be greater among participants viewing race-matched as opposed to race-mismatched exemplar video clips. Thus, we randomized patients to view video clips that were either race-matched or race-mismatched as part of the HUA process. We found AA, on average, had been hemodialysis patients for a longer period of time than EA. They also had higher health utilities than EA for some health states, particularly hemodialysis.All of the noted approaches demonstrate the use of equiformatics, using biomedical informatics techniques to investigate and provide options to achieve health equity for underrepresented populations. |
