Current status of inclusion of black participants in neuropsychological studies: A scoping review and call to action

Abstract

In recognition that insufficient diversity in research impedes the generalizability of findings and negatively impacts clinical outcomes, the 1993 National Institutes of Health (NIH) Revitalization Act required NIH-funded clinical trials to include and assess outcomes for women and minority participants. Since that time, the American Psychological Association (APA) and the American Academy of Clinical Neuropsychology (AACN) have also acknowledged the reporting of this information as an essential element of research, and they have established similar aspirational goals. Nevertheless, Black communities remain disproportionately underrepresented in neuropsychology research. The objective of this study was to investigate current levels of inclusion and reporting of Black research participation in neuropsychological studies.

Publications from high impact neuropsychology journals between 2019-2020 were selected via established methodologies. Studies were analyzed to determine the rates of demographic inclusion and reporting of minority, particularly Black, participants.

A total of 1,764 articles were reviewed across seven neuropsychology journals. Of the 653 studies not excluded for other reasons, 43% neglected to include sufficient information about participants' race/ethnicity. Of the subset of eligible studies that did include racial/ethnic demographic information (n = 349), only 61% included any Black participants at all. Only 34.1% of them included enough Black participants equal to or greater than the proportion of Black individuals within the United States.

Setting a standard of routinely reporting and analytically reflecting on demographic information is necessary to make valid inferences regarding disease sequelae, treatment, and public health strategies. The authors offer specific recommendations to improve the inclusion and reporting of Black research participation, ensure compliance with established policies, and improve the quality of neuropsychological research.

Keywords: Black Lives Matter; Black/African American research representation; NIH Revitalization Act; demographic reporting; disparities; inclusion; research participation.