Health equity for people with intellectual and developmental disability requires vast improvements to data collection: Lessons from the COVID-19 pandemic

The COVID-19 pandemic drastically underscored the lack of proper health surveillance for people with intellectual and developmental disability (IDD) in the USA. This data equity failure resulted in researchers having to rely on nontraditional data sources to develop an understanding of how this population was faring during the pandemic. To begin addressing this data equity concern, in this commentary, we (1) discuss the difficulties in accessing data during the pandemic specifically related to people with IDD; (2) provide guidance regarding how existing data can be used to examine COVID-19 outcomes for people with IDD; and (3) provide recommendations for improving data collection for people with IDD in light of lessons learned during the pandemic. In sum, the data currently available to examine COVID-19 as well as other health outcomes among people with IDD are severely limited, compromising the ability to both understand and address health disparities among this population.