Collecting Data on Patient Race, Ethnicity and Primary Language to Help Hospitals Improve Quality of Care

Leaders of many U.S. hospitals believe they provide the same level of care regardless of a patient's race, ethnicity or language, but few, if any, really know for certain. That's because most of America's hospitals do not have a uniform system for tracking the race, ethnicity and language preferences of their patients.

To address concerns about the poor quality—and equality—of American health care, Expecting Success, the nation's first multihospital collaborative focused on reducing disparities, helped 10 hospitals measure the quality of cardiac treatment they provide to patients based on their race, ethnicity and primary language. While simultaneously working to improve the quality of care for all heart patients, for the first time the hospitals tracked data to identify whether there are racial and ethnic disparities in the care they provide. The Robert Wood Johnson Foundation sponsored the groundbreaking program.

The program produced consistent data on more than 20 cardiac care quality indicators. Despite concerns about how to begin uniformly collecting the data, CEOs at all 10 sites said the data collection process was easier than they expected.

The result was that some sites discovered that they have disparities in the care they provide, some of which are significant. Some noticed more patients than expected speak a language other than English. All agreed that collecting the data was eye opening and improved both the quality and patient-centeredness of their care.

Why Data Collection Is Important Without a uniform way to collect data, hospital information about patient demographics is often wrong. All of the Expecting Success hospitals collected information on race at patient registration, but the program found that the registrar often guessed the race based on the appearance of the patients or left the field blank altogether. When every site started asking the same questions of every patient, it made a huge difference in what their numbers showed.

The data provided accurate answers about who the hospitals' patients were, which drove decisions about languages for discharge materials, whether more interpreters should be hired and where cultural competencies of the staff could be improved.

Even more important, collecting these data allowed hospitals to analyze how well they met specific quality performance measures by patient race, ethnicity or language. Once patient sample sizes were large enough, the sites could actually determine whether there were disparities in the quality of care provided.

Putting the Data Into Practice For the first year of the program, during which a significant amount of data on race, ethnicity and language preferences of patients was generated, the hospitals focused on developing interventions to ensure that their heart patients consistently received the recommended care for their condition.

The ideal situation is for 100 percent of the patients to receive all the appropriate care all of the time, with no disparities for anyone. While the hospitals made tremendous progress toward that goal in a short period of time, they had enough data to show what was happening specifically with minority patients.

Program leaders believe the data showed that care is usually consistent among most patients, but sometimes heart care provided to minority patients showed statistically significant racial and ethnic disparities. Data analysis showed that racial and ethnic disparities are not just a hospital issue or a problem with specific physicians or front-line staff, but emblematic of a larger problem facing communities.

Evidence indicated that racial disparities are closely tied to when people move from ambulatory care to hospital care and back. This transitional care is poor for all patients, but it's a crisis for minorities. Program participants said hospitals, primary care providers and community service agencies need to coordinate much better to improve the quality of hospital—and ambulatory—care provided to heart patients. Nevertheless, they said collecting these data on patients in the hospital was a giant step.

How to Begin Collecting Patient Race, Ethnicity and Language Data The program helped hospitals hard-wire the data collection into their procedures by providing the sites with ongoing assistance collecting and interpreting the data.

Each site designed its own comprehensive strategy for collecting this information. Even though the hospitals already collected race data, none were collecting ethnicity or language information, and the methods they followed were inconsistent. Some sites compiled information at three or four different points in the process, so the same patient had inconsistent data entered multiple times. Others used different terms every time.

Several key steps to help begin the process:

  • Gather opinions from top to bottom. It's important to discuss the purpose and process for data collection with everyone from the CEO to front-line staff.
  • Affirm the legality of the process. Some hospital staff think it's illegal to collect these data, but published research from a variety of sources affirms its legality for improving quality.
  • Identify the time and place for data collection. All sites determine a time, place and person responsible for gathering the data. This usually happens at registration.
  • Think through the technology issues. IT staff must ensure the data transfer to all relevant patient databases, including programs that track the specific care received.
  • Use consistent categories. The current race and ethnicity categories used by the Office of Management and Budget are the recommended standard.
  • Have patients provide the information. All sites rely on patients or their caregiver to provide the information, rather than registration staff "eyeballing" patients.
  • Provide detailed staff training. Sites provide sample scripts, role playing and troubleshooting scenarios to make registration staff comfortable.

From One Hospital to Another: Two Hospitals Offer Tips Montefiore Medical Center in the Bronx, N.Y., is located in one of the world's most notorious cultural melting pots, while the University of Mississippi Medical Center in Jackson, Miss., has little diversity in its staff or patients. Although these two academic medical centers—both Expecting Success participants—launched their data collection efforts in different ways, they have similar insights to share with other hospitals.

Reject preconceived ideas about who your patients are. Both Montefiore and UMiss thought they knew who their patients were, but both produced data that challenged their assumptions. In Mississippi, officials learned that more patients want to communicate in Spanish than the hospital realized. "Because of the data, we are rethinking what kind of language services we need to provide and whether our materials are culturally appropriate," said Michael Winniford, M.D., director of the cardiovascular division at the University of Mississippi Medical Center.

Get the CEO on board. The hospitals agree that having the CEO support the new procedures helped cut through hospital politics. "Fields on a computer screen are valuable real estate in a hospital," said Expecting Success Deputy Project Director Marcia Wilson, M.B.A. "Several technology departments balked at adding fields for ethnicity and language. In those instances it was very handy when the CEO could instantly send a note saying ‘make this happen.'"

Build support top down and bottom up. "We spent a lot of time building consensus throughout the organization," said Rohit Bhalla, M.D., M.P.H., chief quality officer at Montefiore. "This isn't the type of assignment that can be dictated. We asked everyone for input, from senior leadership to IT to registration to others. Getting everyone on board makes the processes go smoothly."

Registration managers hold keys to success. Both Montefiore and UMiss said that registration staff managers were paramount to making sure the new procedures worked. Both sites extensively trained the managers on the program so they could in turn train their staff. At Montefiore, where more than 600 registrars are spread out over 90 locations, this training required a logistical tour de force, but it is largely credited as a main reason the adoption ran smoothly.

Engage the front-line care staff. Both hospitals explained the need for the data to caregivers. "Front-line workers generally come from the community," said Bruce Siegel, M.D., M.P.H., Expecting Success project director. "Telling employees that you are going to track your care to eliminate disparities sends a powerful message to diverse employees. These patients are their brothers and sisters, spouses and children. That makes the staff vested in the process and incredibly powerful advocates for change."

Be flexible with registrars. Both Monetefiore and UMiss found that registration staff wanted direction, but not too much. "They wanted a script, but they also wanted latitude," Dr. Bhalla said. "We didn't say that there is one right way to ask patients about their race, ethnicity and language. There are many ways and, as professionals, they know what is best for each situation."

Check progress. After data collection began, both sites monitored progress. "We analyzed data by registration staff to see which staff had a high number of empty fields or ‘unspecified' answers," Dr. Winniford said. "That helped us counsel them accordingly. When staff know why this is important and are educated on the procedures, they become very comfortable asking the questions and find that patients respond positively."

All information is current as of June 2008 unless otherwise specified. Please note our Terms of Use.

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Expecting Success: Excellence in Cardiac Care

Ten hospitals with racially and ethnically diverse patient populations participated in Expecting Success: Excellence in Cardiac Care, a program of the Robert Wood Johnson Foundation aimed at improving quality of cardiac care while reducing racial, ethnic and language disparities. All 10 hospitals improved the quality of care being provided to their heart failure and heart attack patients.

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