Ethically Using Administrative Data in Research

Abstract

Ethical standards and issues associated with the access and use of state Medicaid administrative data for research purposes from the data owners’ perspective (i.e., state Medicaid authorities) were examined. Key informants at Medicaid authorities were surveyed regarding their states’ policies and procedures related to the access and use of Medicaid data for research purposes. Results indicate that although a majority of states permit the use of Medicaid data by independent investigators for research purposes (74%), there is substantial variability across states in both the frequency with which access is granted as well as with the policies and procedures governing the access to these data. Literature on existing “best practices” by data owners regarding the use of administrative data in research is combined with survey findings to add the discussion in this highly important area and proposed guiding principles for administrative data owners and custodians are offered.