Standard 10: Collection of Data on Individual Patients (guidelines)

“Health care organizations should ensure that data on the individual patient’s/consumer’s
race, ethnicity, and spoken and written language are collected in health records, integrated into the organization’s management information systems, and periodically updated.”

Legality and Purposes of Collecting Data on Race, Ethnicity, and Language
Since 1997, the US Department of Health and Human Services (DHHS) has required that information on race and ethnicity be collected
as a routine part of a variety of federally
funded encounters, and in statements and correspondence since that time DHHS has reaffirmed the legality and importance of collecting and analyzing these data to improve services. [U.S. Department of Health and Human Services. Policy statement on inclusion of race and ethnicity in DHHS data collection activities, October 1997. Available at:]

Furthermore, the Office of Civil Rights (OCR) has stressed that collecting racial and ethnic data represents a critical part of any comprehensive strategy to eliminate health disparities, by, for example, helping organizations attend to health conditions prevalent in specific demographic groups and provide culturally appropriate services. Analyses of data on race and ethnicity also aid in identifying and tracking similarities and differences in plan performance and quality of care in diverse communities.

Other important reasons for collecting these data include:

  • Prioritizing allocation of organizational resources
  • Improving service planning to enhance access and coordination of care
  • Using the data to make more accurate diagnoses and treatment recommendation, applying findings about specific physical, biologic, and physiological variations among different demographic groups (eg, drug metabolism)
  • Identifying and understanding patterns and trends in accessing care as well as cross-cultural differences in outcomes.

Standardization of Data
One difficulty in analyzing demographic data is the variation of classifications and collection methodologies, and efforts are underway at various levels of government to standardize the collection of racial and ethnic categories. All US government agencies rely on the race and ethnicity categories that were used in the 2010 US Census.

The Census employed 2 broad categories of ethnicity:

  • Hispanic, Latino, or Spanish origin (with a choice of 4 possible subclassifications)
  • Not of Hispanic, Latino, or Spanish origin

The Census further employed 15 possible racial classifications:

  • Black, African American, or Negro
  • White
  • American Indian or Alaska Native
  • Asian Indian
  • Chinese
  • Filipino
  • Japanese
  • Korean
  • Vietnamese
  • Other Asian (eg, Hmong, Thai)
  • Native Hawaiian
  • Guamanian or Chamorro
  • Samoan
  • Other Pacific Islander (eg, Fijian, Tongan)
  • Other race

Although healthcare organizations are urged to use this classification system, gathering more detailed information on subpopulations is also encouraged.

Additional Identifiers
When collecting patient information, data on other variables, such as cultural background and socioeconomic status may also contribute to assessing and improving healthcare services. Data on country of origin may reveal characteristics of subpopulations that are not evident in self-identified race/ethnicity or preferred language—eg, the needs of Somali refugees differ in important ways from those of multigenerational African Americans.

In addition, some languages have a variety of distinct dialects (eg, Cantonese and Mandarin Chinese), so collecting patients’ specific dialect data can be valuable in providing appropriate care. Requesting information on the use of sign languages will make it easier to have available appropriate language services for hearing-impaired individuals. Some patients may also have different fluency in spoken vs written language—eg, an LEP client may speak English well enough not to need an interpreter while not being able to read English for purposes of written materials.

Confidentiality and Security of Patient Information
Members of many cultural groups may be concerned about possible negative outcomes from disclosure of racial, ethnic, and related information:

  • Worries among undocumented individuals about drawing the attention of the Department of Homeland Security
  • Fears of receiving inadequate medical services as a result of answering such questions
  • Concerns about being asked to pay higher insurance premiums based on race or ethnicity.

In addition, providers may have reservations that data collected from patients may not be able to remain safe from misuse. An important resource, “A Toolkit for Collecting Race, Ethnicity, and Primary Language Information from Patients,” is available from the Health Research and Education Trust:

Because of such understandable concerns, patients and their communities need to be assured that the information is being collected to enhance their own healthcare services and to benefit their communities. Healthcare organizations are legally required to follow the provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules ( HIPAA provides extensive protections regarding how patients’ health information can be maintained, used, and disclosed, including requirements for written notification of the protections provided by HIPAA. In addition, no one should be required to provide race, ethnicity, or language information or be denied healthcare services if he or she chooses not to provide such information.

Further concerns may arise about the security of patient data that are maintained electronically, whether in individual providers’ facilities or at the data storage facilities of large health networks and third-party payers. Although breaches of the security of these systems have occasionally occurred, provider organizations today make use of increasingly sophisticated data security systems that are developed specifically to support the information protection guarantees included in HIPAA. In fact, the Patient Protection and Affordable Care Act of 2010 (available at: contains extensive provisions regarding the collection, storage, use, and transfer of patient information, along with financial incentives to healthcare organizations and third-party payers to either install or upgrade systems for collecting patient information.

Data Collection at First Contact
The time when information on race, ethnicity, language, and so forth are collected (eg, at enrollment vs at time of service) may introduce variations in a patient’s information, which may not be routinely shared among various service venues. In ideal circumstances, the entity that is responsible for enrolling a patient would collect these data during enrollment and then disseminate the information among the providers who see that patient. In less complex systems, individual providers such as physicians or pharmacists could collect and record this information at the first point of contact. Not only should the information be entered into the patient record but it should also be shared with other departments that may interact with the patient, such as billing or social services. For existing patients—as opposed to newly enrolled ones—records may not contain all of the necessary data; eg, information about preferred language may be missing. One approach to obtaining such missing information is to train staff members who make appointments to request that information the next time the patient requests an appointment.






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