Extensive scientific research shows that
disparities in the quality and outcomes of health care correlate with patients’ race and ethnicity. The Health
Resources and Services Administration defines these health disparities as “population-specific
differences in the presence of disease, health outcomes, or access to health care.” Numerous
studies show that patient-specific race and ethnicity data help researchers understand the complex factors associated
with reducing health care disparities. This information also assists primary care and other providers in designing and
evaluating effective quality improvement programs.
Recent new studies indicate that
a first step toward addressing health disparities involves collecting patients’ race, ethnicity, and language data,
and linking this information to health care quality, safety, and utilization. “Medical practices alone cannot solve
the problems of disparities. Collecting data is a start—not from the perspective of one patient at a time, but from
a whole practice effort to improving quality,” says Robert C. Like, MD, MS, Director, Center
for Healthy Families and Cultural Diversity.
Tailoring Health Care With Evidence on Needs
If data on race, ethnicity, and primary language are available, disparities in health care can be addressed through quality
improvement interventions tailored to patients’ specific needs. In addition, explains Dr. Like, “Stratifying
patients by age and gender is another important element of quality improvement efforts aimed at the spectrum of care—from
prevention to treatment.” However, standardized data on racial and ethnic differences in health care have been
generally nonexistent because of a lack of standardization and legal and ethical concerns.
The need for standardization has become an increasingly urgent and top national priority in light of President
Bush’s 2004 federal initiative to accelerate adoption of a personal electronic health record (EHR) record for
every citizen by 2014. However, many obstacles to data collection—limited resources, patient privacy concerns,
and general resistance—impede current data collection efforts, according to the Institute of Medicine’s landmark
report—Unequal Treatment: Confronting Racial
and Ethnic Disparities in Healthcare. Yet, private and public sector groups alike have weighed in on the issue of
data collection by race and ethnicity. For example—The
Right to Equal Treatment (a report issued by Physicians for Human Rights)—states emphatically that collecting
data on race and ethnicity is essential for understanding and promoting health care quality.
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Does Collecting Data
on Race & Ethnicity Violate the Law?
As more and more providers collect race and ethnicity data to address gaps in quality of care, others
worry about potential liability associated with collection and use of such data. This complex question of legal exposure
is addressed in an important new policy analysis—The
Legality of Collecting and Disclosing Patient Race and Ethnicity Data—by the Robert
Wood Johnson Foundation (RWJF) and the George Washington (GW) University School
of Public Health and Health Services.
The policy brief examines
whether collecting patient data by race or ethnicity violates the law. Analysts looked to the public law prohibiting discrimination—Title
VI of the 1964 Civil Rights Act—and concluded that no federal or state liability exists for health care providers
who collect and share health care quality data by race and ethnicity, as long as the effort is part of an overall quality
improvement process. In fact, experts agree, the use of data to improve quality and reduce disparities may decrease the
risk of “race-based” malpractice claims. Organizations may want to consider consulting with their own legal
council and risk-management staff to determine the best approach for a specific practice.
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Obstacles to Collecting
Patients’ Race & Ethnicity Data
Despite assurances regarding liability, the health care industry remains particularly sensitive about
disclosing provider and/or system performance by patient race and ethnicity. Because racial discrimination has figured
prominently in the history of American medicine and health care, perceptions of inequality linger although much of the
differential treatment may be inadvertent. These concerns may be intensified, claims the RWJF/GW
report, given that no federal guidelines exist regarding the collection or reporting of race and ethnicity data, even
among health care programs that receive federal assistance under the auspices of Title
VI for the fundamental purpose to end discriminatory practices.
Recent efforts to promote data collection by race and ethnicity are encouraging, however. The
Minority Health and Health Disparities Research and Education Act of 2000, for example, required the National Academy
of Sciences to study U.S. Department of Health and Human Services’ (HHS) data collection procedures and report
to Congress. The review panel concluded that collecting
data on race and ethnicity was a top priority for understanding disparities and identifying the effects of unequal
treatment on minority populations.
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Call for Federal Guideline Recommendations: Key Elements to Data Collection
The authors of the RWJF/GW
report urge the HHS to prepare federal data collection guidelines that contain these key elements:
- A clear statement that links race and ethnicity
data collection with quality improvement interventions.
- Strategies to achieve uniformity of data,
so that the same types of data are collected for all persons using health care services.
- Data collection that occurs outside actual
service delivery points to reduce clinical care interruptions.
- Recommendations for appropriate collection
standards and methodologies.
- Advice on maintaining patient privacy and
security in both data collection and reporting.
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Practice-based Strategies & Tools
In a climate of increased regulatory pressures, including mandates in 22 states to collect patient-specific race and ethnicity
data, the Health Research and Educational Trust (HRET)
issued a Web-based toolkit that
health care organizations can use to systematically measure, report, and compare quality of care processes and health outcomes
by race and ethnicity. The HRET’s strategies to ensure
accurate collection of these data include:
- Asking patients or caretakers to provide information (they are more likely to be accurate than staff members).
- Establishing protocols for collecting information at the time of patient registration.
- Standardizing racial and ethnic categories.
- Keeping information in a standard format that can be merged with clinical data files.
- Addressing patient concerns about how data are gathered and used before collecting any information.
A recent study—A
System for Rapidly and Accurately Collecting Patients’ Race and Ethnicity—showed that “self-describing” data collected
directly from patients using their own preferred racial and ethnic terms versus traditional methods of categorizing patients
or asking registration staff to identify patients’ race or ethnicity produced fewer missed results and unusable
information.
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Resources for Practices—Culturally & Linguistically Appropriate Services (CLAS)
The need for standardized data collection on patients’ race and ethnicity to improve quality
of care has been well documented. In addition, a large body of parallel work in the disparities field has focused on
provision of culturally
and linguistically appropriate health care services.
Fourteen national standards issued
by HHS’ Office
of Minority Health respond to the need to ensure that all people entering the health care system receive equitable
and effective treatment in a culturally and linguistically appropriate manner, to correct inequities in the delivery
of health services, and to make these services more responsive to the individual needs of all patients. To learn more
about the CLAS standards, visit www.omhrc.gov/templates/browse.aspx?lvl=2&lvlID=15.
For practical resources about improving quality of care for minority populations, please visit:
— Jo Ann Kairys, MPH,
contributing editor
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