There was considerable variation in how racial and ethnic groups were portrayed, reported, and analyzed in the hospice and palliative medicine (HPM) literature, despite the existence of established racial and ethnic inequalities in treatment. For one study, researchers sought to assess the reporting of race and ethnicity information in HPM research and the diversity of races and ethnicities among study participants.

On January 1, 2015 through December 31, 2019, they identified adult patient- and/or caregiver-centered studies completed and published in the United States as JPSM Original articles. The frequency of factors associated with reporting racial and ethnic identity was compiled using descriptive analysis.

In total, 218 of the 1,253 studies screened were eligible and examined. About 78 different racial and ethnic group designations were used. Based on classifications from the Office of Management & Budget, more than 85% of the studies contained ≥ 1 non-standard label. Exactly how data on race and ethnicity was collected was not explained in 25% of the studies and in 83% of the studies there was no justification. Only 14 studies specifically addressed race or ethnicity-based health or health inequalities, and more than half of the studies did not include race or ethnicity-based data in the analysis. Studies included 95%, 71%, 43%, 37%, 10% and 4% of people who identified as white, black, Hispanic, Asian, Native American or Alaska Native, Native Hawaiian or other Pacific Islander. White people made up a greater percentage than 57.8% of the population in the United States in 92% of the surveys.

The results indicated significant potential to standardize reporting on race and ethnicity, work towards diversity, equity, and inclusion among study participants, and prioritize racial and ethnic discrepancies in HPM research.

Reference: jpsmjournal.com/article/S0885-3924(22)00827-2/fulltext