Connecticut advocates push for improved racial, ethnic and language data

While the federal landscape continues to hold our attention as threats to public health and coverage programs continue to surface and evolve, state-level advocates are busy advancing agendas that inform health system change and advance health equity. At the top of the health equity agenda is disaggregated, transparent and accessible race, ethnicity and language (REL) data. States are engaged in efforts to innovate and influence the health care system to bend the cost curve, improve quality care and value for consumers – and data is a priority. REL Data provides systems, communities and consumers with the information they need to make informed decisions, design targeted interventions and improve health outcomes for all of their residents. Importantly, as states work to address the vast and deep legacy of racism and resulting health disparities that affect people of color, uniform disaggregated data is a tool to guide, monitor and adjust programs and policies that seek to advance equity.

Show me the data

In 2017, Health Equity Solutions, a Connecticut-based health advocacy organization, convened advocates and stakeholders to discuss the data landscape in the state and, more importantly, understand whether disaggregated REL data were accessible and being used to address health disparities. The group determined that legislative action was necessary to prioritize data collection and use.

Last week, consumer health advocates in Connecticut provided testimony for Senate Bill 465: An Act Concerning Disparities in the Health Care System. The bill would require uniform and standard data collection of race, ethnicity and language (REL) across state agencies, boards and commissions. Currently, data is collected and shared inconsistently. According to a recent report from Connecticut Voices for Children, current race, ethnicity and language data collection in Connecticut is often inconsistent and not accessible. This leads to limited data analysis for evaluating trends and outcomes across programs. In our efforts to address health disparities, data is a vital tool to both target interventions and evaluate improvements in health outcomes. Advocates correctly assert that uniform data is required to advance any health equity agenda and influence innovations that seek to address the needs of residents of color, including social determinants of health. The lack of uniform data has consequences – particularly for people of color.

Connecticut is a state that embraced the Affordable Care Act, led the country in expanding Medicaid, held the spotlight as one of the most successful state Marketplaces nationwide, and continues to engage in innovation work through a State Innovation Model (SIM). The lack of uniform data stalls efforts to take innovation and health equity work to the next level. Without it, there is no single thread that knits all of these efforts together to inform a more integrated full-scale effort to target disparities experienced by residents and improve health outcomes over time. Data can be a uniform tool, allowing systems to talk to one another and be nimble in responding the needs of consumers.

Community Catalyst has been working on health equity issues for a number of years and data collection remains a top recommendation. We believe that the federal and state government should require health systems to collect data on race, ethnicity and language (REL) and use it to design targeted interventions to improve population health.

Go on Connecticut – Be a leader!

Connecticut is not alone. Only a handful of states have taken steps to include collection of race, ethnicity and language data into their laws, regulations or ordinances. These include California, Massachusetts, Minnesota, North Carolina and Oregon. Advocates want Connecticut to step up and be a national leader. What about your state?

 In addition to Eva Marie Stahl, Project Director of the Community Catalyst Children’s Health Initiative, this blog was co-authored by Tekisha Dwan Everette, Executive Director, Health Equity Solutions