1. Understanding and Implementing the CLAS Standards
Standard 10: Collection of Data on Individual Patients (guidelines)
“Health care organizations should ensure that data on the individual patient’s/consumer’s
Legality and Purposes of Collecting Data on Race, Ethnicity, and Language
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:
Standardization of Data
The Census employed 2 broad categories of ethnicity:
The Census further employed 15 possible racial classifications:
Although healthcare organizations are urged to use this classification system, gathering more detailed information on subpopulations is also encouraged.
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
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: http://www.hret.org/resources/1914710936.
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 (www.hhs.gov/ocr/privacy/). 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: http://www.gpo.gov/fdsys/pkg/PLAW-111publ148/content-detail.html) 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