A policy analysis released today by the Robert Wood Johnson Foundation (RWJF) and The George Washington University School of Public Health and Health Services (GW) affirms that it is legal to collect and report health quality data by patient race and ethnicity, and calls for government guidelines to further encourage and shape the practice. The analysis underscores that collecting race and ethnicity data about patients—when conducted as part of a program to improve health care quality—does not violate federal or state laws or increase the risk of race-based malpractice claims.

Funded by RWJF and conducted by a team of GW researchers, the analysis comes at a time when an increasing number of health care providers are collecting race and ethnicity data to ensure that quality care is provided to all patients, while others question the legality of doing this and have concerns about possible liability exposure created by the collection and use of such data. Researchers conducted the analysis as part of the Health Information Law Project—an initiative to examine the legal and policy opportunities for the use of health care information to improve the quality of care. Ensuring the legality of data collection is considered critical because many experts believe one way to effectively improve quality for all patients and reduce racial disparities in health care is to collect and track patient data by race and ethnicity, evaluate the disparities in treatment that are found and design interventions that will appropriately and consistently increase quality.

"Collecting data by patient race and ethnicity is a critical step for our nation to be able to understand and reduce disparities and provide every patient with the right care at the right time," said Michael Painter, J.D., M.D., senior program officer for the Robert Wood Johnson Foundation. "Many hospitals, doctors, insurers and the government agree that collecting data by patient race and ethnicity is a top priority, but our nation has been slow to develop guidelines encouraging this step and outlining how this data can and should be used. This analysis calls for action that can help improve the quality of care provided to all Americans."

The analysis, The Legality of Collecting and Disclosing Patient Race and Ethnicity Data, shows that the public law prohibiting discrimination—Title VI of the 1964 Civil Rights Act—creates no legal liability for health care providers who collect and report health care quality data by race and ethnicity, when undertaken as part of an overall program to improve quality. The analysis shows that, in fact, collecting and sharing these data to improve quality and reduce disparities would be evidence of following the law, rather than violating it. Drawing from data collection standards applicable to the housing, mortgage and credit lending industries, the analysis underscores that many industries other than health care have managed to address this problem successfully by using collection standards.

"Fears of liability are unfounded when it comes to providers or insurers collecting and disclosing race and ethnicity data as part of a health quality improvement program," said lead author Sara Rosenbaum, J.D., a professor of Health Law and Policy and chair of the Department of Health Policy at GW. "No one needs to be afraid of being liable for breaching privacy or being at increased risk of malpractice claims when race and ethnicity data are appropriately collected. In fact, collecting this data is not only in line with the law, but introduces more clarity into the process to ensure that disparities are quickly recognized and effectively addressed."

To expedite the collection of needed data and affirm its legality, the report calls on the U.S. Department of Health and Human Services (HHS) to issue federal guidance on the topic, something that has never been done, despite a commitment to quality improvement and reducing racial disparities in health care that has spanned both the Clinton and George W. Bush Administrations. The report calls the development of guidelines ‘long overdue,' with the collection of racial and ethnic data in the health quality sector lagging far behind other government efforts to improve fairness in housing and banking, for example.

The analysis suggests that guidelines on the voluntary collection of race and ethnicity data should contain the following elements:

• A clear statement regarding the connection between race and ethnicity data collection practices and health care quality improvement programs;
• Recommendations on uniformity of data collection, so that health care providers collect the same type of data for all persons using health care services;
• Collection at points other than actual service delivery in order to minimize interruptions to the clinical care process;
• An explanation and recommendation of appropriate collection standards and methodologies; and
• Advice on compliance with patient privacy and security safeguards in both the collection of data and reporting of results.

The report suggests that states could further safeguard the health care industry from claims of discriminatory practices in the quality of the care they provide by enacting legislation that treats race and ethnicity data collected for quality improvement purposes as evidence of professionally appropriate care. It also suggests that the federal government could use its authority under the recently enacted Patient Safety Quality Improvement Act to create incentives for collecting and reporting of such data.

The Legality of Collecting and Disclosing Patient Race and Ethnicity Data is available online at www.rwjf.org and www.gwumc.edu/sphhs/healthpolicy.

# # #

The Health Law Information Project, funded by the Robert Wood Johnson Foundation, is a special initiative whose mission is to examine and report on the interaction between the law and health information in a changing health care system. With a home in the Department of Health Policy at the George Washington University School of Public Health and Health Services, the Project, working under the guidance of a standing committee, will produce both brief and extended analyses of emerging issues in health information law; present balanced options and legal tools for addressing perceived legal barriers to the responsible use of health information to improve quality and reduce health care disparities; and respond to requests for technical support on critical questions in health information law.

The George Washington University Medical Center is an internationally recognized interdisciplinary academic health center that has consistently provided high-quality medical care in the Washington, D.C., metropolitan area for 176 years. The Medical Center comprises the School of Medicine and Health Sciences, the 11th oldest medical school in the country; the School of Public Health and Health Services, the only such school in the nation's capital; GW Hospital, jointly owned and operated by a partnership between The George Washington University and Universal Health Services, Inc.; and the GW Medical Faculty Associates, an independent faculty practice plan.

The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation's largest philanthropy devoted exclusively to improving the health and health care of all Americans, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, meaningful and timely change. For more than 30 years, the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. By helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in our lifetime.