NCQA’s Healthcare Effectiveness Data and Information Set (HEDIS), beginning with the Measurement Year 2022 and ramping up through MY2024, will begin stratifying selected performance measures by race and ethnicity. The idea is that through HEDIS reporting, health plans will be able to identify and address inequities in healthcare and be held accountable for taking these actions. Until now, collection of race and ethnicity data has been sporadic and inadequate. Lack of standardization practices, patient mistrust of how plans will utilize information, and a dearth of regulatory guidance from state and federal entities has hampered efforts by plans and health systems to gather such data.
Data theft is a reason individual patients may be reticent or unwilling to provide these sensitive data. In an analysis of data breaches between 2011 and November 2021, Statista Inc, found that 20 of the largest data breaches occurred at health insurers, such as Anthem, Optum, and Premera Blue Cross in Washington state. Others may be mistrustful of the healthcare system more generally due to unethical research practices in the past.
To engender trust across communities of persons engaging with the healthcare system, clear and operable methods of managing and securing these data as well as clear instruction for its use are a fundamental requirement.
Pharmaceutical/biopharmaceutical manufacturers are in a unique position to offer perspectives and assistance as organizations tackle issues of data aggregation, security, and analysis.
Further, manufacturers may find opportunities to join with other groups to advocate for clarity in state and federal statutes and regulations that provide guardrails for the proper uses and security of these sensitive data.
Here is an example:
The Blue Cross and Blue Shield Association (BCBSA) and the Blue Cross and Blue Shield companies released a paper that outlined standards for the collection and use of member data for race and ethnicity, sexual orientation, gender identity, and socioeconomic status in April 2022. As they work to flesh out the outline and operationalize the standards, manufacturers could help the BCBSA create a final product that describes not only the best practices in handling these data, but how to implement them as well.
Health systems, researchers, and academic organizations are collaborating to define sources of ongoing systemic inequities in care, outline opportunities for improvement, as well as accumulating and sharing examples of how these opportunities can be used to make systemic change. Insurers are also taking their first steps in this area.
Manufacturers have many opportunities to expand their engagements, share knowledge, and help to assure all voices are heard as these efforts move forward.
Statista. Largest healthcare data breaches to date in the United States as of November 2021, by number of affected individuals. July 7, 2022. Accessed November 4, 2022. https://www.statista.com/statistics/1275847/largest-healthcare-data-breaches-usa/
National Institutes of Health, National Library of Medicine. The C. Everett Koop Papers. AIDS, the Surgeon General, and the politics of public health. Accessed November 4, 2022. https://profiles.nlm.nih.gov/spotlight/qq/feature/aids
Centers for Disease Control and Prevention. The U.S. Public Health Service Syphilis Study at Tuskegee. The Tuskegee timeline. April 22, 2021. Accessed November 4, 2022. https://www.cdc.gov/tuskegee/timeline.htm
Blue Cross Blue Shield Association. Setting the standard: addressing health disparities with better data. April 27, 2022. Accessed November 2, 2022. https://www.bcbs.com/the-health-of-america/healthequity/setting-the-standard-addressing-health-disparities-better-data
National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. The National Academies Press; 2022. Accessed November 4, 2022. https://doi.org/10.17226/26661