Having spent more than 25 years advocating for equitable healthcare, I’ve listened to countless stories from individuals whose lives have been forever changed by the historic inequities that exist within our healthcare system.
I’ve heard mothers share their heartbreak over traumatic birth experiences and outcomes, and families recount the devastating complications from surgeries. These stories, though deeply personal, often feel like whispers lost in the wind because our current data doesn’t capture the full picture. We know that racism impacts the type of care and quality of care, but without demographic data, we can’t fully understand or address these issues. It’s crucial that we find a way to connect these personal stories to the larger narrative of healthcare equity, ensuring that every patient’s experience is acknowledged, and that there’s transparency and accountability, so that every community’s needs are addressed.
For communities of color, racism in the healthcare system can have a devastating impact, affecting not only the quality of care that patients receive but also their overall well-being. Research shows that these communities experience higher rates of patient adverse events — incidents that cause permanent harm, necessitate life-saving interventions, or potentially lead to death at greater frequencies than White patients. Disturbingly, these trends disproportionately impact Black women and other communities of color.
A recent Kaiser Family Foundation survey found that a third of Americans see racism as a major problem in health care, compared to over half (52%) of Black people surveyed. Disparities in maternal health outcomes and overall distrust of the medical system are historic and well-documented. According to the California Health Care Foundation’s “Listening to Black Californians” research report, nearly one-third of Black Californians say they have been treated poorly by healthcare providers just because of their race or ethnicity. Additionally, a significant number of Black Californians overall (38%) and of Black women in particular (47%) say there has been a time when a provider did not treat their pain adequately.
While we know this to be true, right now, no demographic information is collected for patients who experience things like negative birth outcomes, surgery complications, patient safety events, or other adverse experiences in hospital settings. The California Department of Public Health (CDPH) tracks these events, but doesn’t collect information like the age, race or gender of these patients. As a result, the state doesn’t know who is suffering the most from these avoidable mistakes, and therefore how to prevent them from happening in the future.
This is why we are working in partnership with the California Pan Ethnic Health Network (CPEHN), Black Women for Wellness Action Project, and the office of Assemblymember Mia Bonta (D-Oakland) to advance Assembly Bill (AB) 3161, legislation that will seek to collect demographic data on patient complaints and safety incidents. It is our hope that a bill that collects this important demographic data can be a step toward in capturing evidence-based data on racial bias trends in California’s healthcare system and the impact they have on the safety, health, and well-being of patients.
AB 3161 would require the collection of self-reported patient demographics when receiving complaints regarding hospitals and long-term care facilities. It will assist in compiling, reviewing, analyzing, and publishing trends of patient safety events. This bill would also require the publication of adverse event trends based on demographic data in a manner that is consistent with patient confidentiality.
Critics, such as the CDPH, have raised concerns over the cost of updating their forms to accommodate demographic data collection. The department estimates the annual cost for updating, modifying or creating a new system for this demographic data collection could cost at least $1.6 million each year for the first two years.
While we appreciate the state’s estimate, the cost of doing nothing, when health and lives are at stake, is far greater.
Understanding and addressing health disparities is not just about statistics; it’s about real people with real stories. By collecting demographic data, we take a significant step toward true transparency and accountability in our healthcare system. This will allow us to see the full picture and make informed decisions that can save lives and improve the quality of care for all Californians. Let’s ensure that every patient’s experience is acknowledged, and every community’s needs are addressed, inclusive of their race or ethnicity.
About the Author:
Rhonda Smith is the Executive Director of the California Black Health Network.
This article is supported by the California Black Health Journalism Project, a program created by California Black Media, that addresses the top health challenges African Americans in California face. It relies on the input of community and practitioners; an awareness of historical factors, social contexts and root causes; and a strong focus on solutions as determined by policymakers, advocates and patients.
