The ONC recognizes the opportunities that data-driven technology has in healthcare, but that racism and structural biases are easily encoded into datasets. To mitigate the potential risks, the ONC outlined five changes to how race and demographic data is recorded.
Race and ethnicity data capturing is important to eliminate health disparities and inform patient care. It also plays an important role in informing federal policies, such as advancing efforts to improve racial equity and provide additional support to underserved communities, according to a May bulletin.
Five changes:
- In accordance with the CDC race and ethnicity code system, a certified health IT module must be capable of recording all of a patient's ethnic codes, including multiple races and ethnicities.
- A certified health IT module must be able to demonstrate when a patient chose not to provide data on race or ethnicity.
- There is no minimum number of selections required to be available, aside from the five race standards previously required by the Office of Management and Budget.
- The certified health IT module must be capable of aggregating each one of a patient's ethnic codes recorded to the OMB race and ethnicity categories.
- It is not specified how many CDC race and ethnicity code sets need to be displayed. This is left up to developers to take the users into consideration and determine how this aspect is designed.