Data on race, ethnicity and language is critical to making real healthcare progress
There are significant disparities in health status based upon race, ethnicity, and other factors that deprive many Connecticut residents of an equal opportunity to enjoy good health and well-being. That some Connecticut residents live without proper treatment of illness and injury due to disparities in health care access, affordability, and outcomes based upon race, ethnicity, and language (REL) is self-evident to many but not to all.
Without raw data and the resulting ability to quantify and track them, we cannot make clear the pervasive inequities and health disparities in Connecticut. It is critical that we have necessary data to address and mitigate root causes of healthcare disparities and assess the effectiveness of our solutions to resolve them.
Legislation pending this session would provide patients with a voluntary option to share REL data with providers who participate in the independent, non-profit, health information exchange. The objective is to advance health equity and reduce health disparities driven by data specific to those inequities and disparities.
This initiative is meant to address existing racism experienced in Connecticut in different ways by different demographic groups. Without the data generated by this initiative, this inherent racism in our systems remains invisible.
Without question, there is a sense of urgency about the issue to be addressed by this legislation, which has been in process for several years already. Chronic conditions like diabetes and asthma –-now amplified by COVID-19 –-disproportionately impact populations based upon racial, ethnic and language demographics.
This pending legislation would bring Connecticut in line with data collection standards endorsed and engaged by analysts at the U.S. Department of Health and Human Services and the state’s Community and Clinical Integration Program, which included the collection of data to identify and prioritize opportunities to reduce health disparities.
It also aligns Connecticut with a federal minimum data collection requirement from the Office of Management and Budget (OMB) and the more detailed Centers for Disease Control standards related to healthcare funding.
Several hospitals and providers successfully started collecting detailed REL data as a part of Connecticut’s Community and Clinical Integration Program. Going forward it will be important that all Connecticut providers, hospitals, and agencies collect REL data in a consistent and standard way to gain insight into health disparities in clinical outcomes and other areas across the state.
The statewide Health Information Exchange is a system for sharing data across systems and networks to inform better care coordination, clinical decision-making, lower health care costs, and access to real-time information about community health. Including REL data will mean that this information can be used to identify and address the consequences of systemic racism.
No one will be forced to provide REL information in order to access health care. It has been and always will be voluntary.
Health care providers already collect self-reported REL data. Doing so in a uniform manner just makes the data more useful. Some providers already engage in training to ensure the data is collected in a culturally appropriate manner. Others may need to do so to ensure providers and patients understand why the data is collected and how it is used and protected. This is a challenge that can be met if we commit now to the need to collect these data.
Analysts will have access to these data only at an aggregate level, protecting and ensuring privacy and confidentiality regarding all patient data. REL data is collected to identify trends in health disparities by race, ethnicity, and language. This improves our understanding of inequities in health outcomes and which efforts to address them are working.
With standardized REL data, providers and policymakers will be better equipped to provide targeted interventions to improve health and wellbeing among all residents, particularly those most impacted by health disparities so obvious to us all after the past year of living through the COVID pandemic.
Connecticut can do better for all its residents and spend healthcare dollars more wisely and effectively in the process. Pending legislation will help provide the data to show the way.
Vicki Veltri is the Executive Director of the CT Office of Health Strategy; Tekisha Everette is the Executive Director of Health Equity Solutions. Matt McDermott is the lead organizer of Congregations Organized for a New Connecticut.
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