Social determinants of health data in solid organ transplantation: National data sources and future directions

Health equity research in transplantation has largely relied on national data sources, yet the availability of social determinants of health (SDOH) data varies widely among these sources. We sought to characterize the extent to which national data sources contain SDOH data applicable to end‐stage organ disease (ESOD) and transplant patients. We reviewed 10 active national data sources based in the United States. For each data source, we examined patient inclusion criteria and explored strengths and limitations regarding SDOH data, using the National Institutes of Health PhenX toolkit of SDOH as a data collection instrument. Of the 28 SDOH variables reviewed, eight‐core demographic variables were included in ≥80% of the data sources, and seven variables that described elements of social status ranged between 30 and 60% inclusion. Variables regarding identity, healthcare access, and social need were poorly represented (≤20%) across the data sources, and five of these variables were included in none of the data sources. The results of our review highlight the need for improved SDOH data collection systems in ESOD and transplant patients via: enhanced inter‐registry collaboration, incorporation of standardized SDOH variables into existing data sources, and transplant center and consortium‐based investigation and innovation. This study reports the availability of social determinants of health data applicable to end‐stage organ disease and transplant patients within national sources, finds variability in detail and consistency of data inclusion, and offers strategies for improved data collection at the health system and national levels.