The federal government is stepping up efforts to eliminate health disparities, in part by requiring better data collection. Under Section 4302 of the Affordable Care Act (ACA), all national population health surveys sponsored by the Department of Health and Human Services must include standardized information on race, ethnicity, sex, primary language, and disability status.
Last October, HHS got the ball rolling by finalizing new data collection standards to try to get more specific information on health issues facing certain racial subgroups. Soon, the agency will begin collecting health data on lesbian, gay, bisexual, and transgender populations.
Dr. Cedric Bright
Dr. Cedric Bright, president of the National Medical Association, explains why improved data collection is essential and what individual physicians can do to combat health disparities. Dr. Bright is assistant dean of special programs and admissions in the department of medical education at the University of North Carolina, Chapel Hill.
Question: Why are these data collection requirements important in tackling health disparities?
Dr. Bright: It is clear that certain ethnic groups do not respond to management in the same way. There are both cultural and genetic differences, and because of these we must not collect data without descriptors. It’s hard to say that you have disparities if you’re not collecting the data to be able to disaggregate populations and see if indeed there are differences in outcomes.
The truth is that we can sweep issues of disparities under the carpet by not disaggregating our data. There was a proposal in California a few years ago to do away with categories, which did not pass because people understood the implications. Likewise, HHS has implemented a policy where they disaggregated the data for Latinos and for Asians and Pacific Islanders. It is my hope that they will disaggregate the data for African Americans as well. Certainly there are differences between a native African American, versus a first- or second-generation African, or versus someone from the Caribbean who is black. This will truly help us to drill down into our data sets to find more details in health experiences and outcomes.
Question: How can physicians use the subgroup data to make better clinical decisions?
Dr. Bright: Disaggregated data helps you focus on the patient in front of you. If the patient provides their self-identified racial and ethnic information and you already know the data related to those different subgroups, that allows you to tailor your communication to him or her rather than speak generally. Having this information allows us to provide better treatment options. In addition, translational research demonstrates far too often that implementation of management protocols often need to be tailored to factors such as language and culture. Having subgroup data would be important in designing systems to take advantage of these differences. This type of diversity of data will impact the future of comparative effectiveness research and clinical trials.
Question: Does the ACA do enough to address health disparities?
Dr. Bright: The law seeks to address the health disparities issue head on. It established the National Partnership for Action to End Health Disparities. This partnership, in which the National Medical Association participated, developed the National Stakeholder Strategy for Achieving Health Equity. The goals of this national game plan will fall under five categories: awareness; leadership; health system and life experience; cultural and linguistic competency; and, most germane to this discussion, data, research, and evaluation. In addition, the ACA created the Patient-Centered Outcomes Research Institute, which will help us develop a keener understanding of the relative effectiveness of clinical outcomes. The law also requires reporting quality measures from Medicaid and the Children’s Health Insurance Program. This large and diverse cohort can be the basis of some evidence-based trials and comparative effective research.
Most importantly, insurance expansion is so critical because a disproportionate number of uninsured Americans are black and Latino. Our working poor often access the health care system only when there is a significant problem that stops them from being able to work. Having access to health insurance will allow people to become more proactive in improving their health.
Question: Why is the health care community having such a tough time making a dent in health disparities?
Dr. Bright: It’s multifactorial. First, there’s a component of individual responsibility. What part does an individual play in their health status? How much blame goes to those who continue to eat and do the wrong things? There’s also industry responsibility. The food industry tailors their products to maximize the number of calories, but not the nutritional value. Next, there’s government responsibility related to how we zone our neighborhoods. This is significant because we can’t have neighborhoods that don’t have access to fresh food at an affordable price. Last, there is system and provider bias. Many studies demonstrate that African Americans are not treated the same as others in the health care systems. They are not referred to specialists as often and do not get the same treatments, as shown in the Schulman study from 1999 and the Institute of Medicine’s 2003 report "Unequal Treatment."