Race and ethnicity are commonly used in medical, public health, and epidemiologic research. Utilizing these variables can help to characterize utilization and to identify groups at high or low risk of pharmacoepidemiologic health outcomes of interest. For health plans, these data have great utility for care delivery, understanding health disparities impacting health plan members and identifying points of intervention, and designing targeted quality improvement activities.
Health plans’ data on race and ethnicity of their members are historically undercaptured, particularly in healthcare claims data1 . Data that are captured often lack adequate and accurate detail, particularly to describe multiracial populations. Data collection is not consistent across entities covered by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) – e.g., hospitals, health plans – and much depends on private sector vs. public sector regulations and incentives2 .
This project seeks to better understand the availability and validity of race and ethnicity data elements of interest, as well as consider improvements to the use of these data in the Sentinel System. These efforts will ultimately improve capacity to study racial and ethnic disparities in the pharmacoepidemiologic arena related to either medical product exposures or health outcomes of interest. This project includes two aims:
- Aim 1: A literature review synthesizing findings and trends in race and ethnicity in pharmacoepidemiological studies.
- Aim 2: Through collaboration with Sentinel Data Partners, assess interest and capacity for enhanced data capture of race and ethnicity. Findings from Aim 1 and these qualitative interviews with Data Partners will inform the composition of specific recommendations for possible Sentinel Common Data Model enhancements surrounding data capture of race and ethnicity.
- 1Ng JH, Ye F, Ward LM, Haffer SC, Scholle SH. Data on race, ethnicity, and language largely incomplete for managed care plan members. Health Aff (Millwood). 2017;36(3):548–52. https://www.healthaffairs.org/doi/10.1377/hlthaff.2016.1044
- 2National Research Council (US) Panel on DHHS Collection of Race and Ethnic Data; Ver Ploeg M, Perrin E, editors. Eliminating Health Disparities: Measurement and Data Needs. Washington (DC): National Academies Press (US); 2004. 6, Private-Sector Collection of Data on Race, Ethnicity, Socioeconomic Position, and Acculturation and Language Use. Available from: https://www.ncbi.nlm.nih.gov/books/NBK215758/
Monica Ter-Minassian, ScD, MS, MS; Kaiser Permanente Mid-Atlantic States, Mid-Atlantic Permanente Research Institute, Rockville, MD
Stacey Moisuk, MPH; Department of Population Medicine, Harvard Medical School & Harvard Pilgrim Health Care Institute, Boston, MA
Jose J. Hernandez, RPh, MPH, MSc, PhD; Office of Surveillance and Epidemiology, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, MD
Anna DiNucci, MPH; Issmatu Barrie, MS; Kaiser Permanente Mid-Atlantic States, Mid-Atlantic Permanente Research Institute, Rockville, MD
Suzanne Carter, PhD, MBA; Sampada Nandyala, MPH; Ryan Schoeplein, MPH; Department of Population Medicine, Harvard Medical School & Harvard Pilgrim Health Care Institute, Boston, MA
Jacqueline Puigbo, PhD; Office of Product Evaluation and Quality, Center for Devices and Radiological Health, U.S. Food and Drug Administration, Silver Spring, MD