edly collecting the same information on individuals. This will reduce the burden both for respondents and for those collecting the information.
In developing standards for data collection, it is also critically important to provide clear information that indicates how the data will be used and that the data are provided on a voluntary basis. Providing this information can help alleviate fears that the data will be used for discriminatory purposes. This information should be provided at the data collection point, which in most cases would be when the patients and plan enrollees fill out forms. Acknowledging the risks associated with the collection and use of data on race and ethnicity is part of the due diligence of the collection of these data by hospitals, health plans, and medical groups. Building trust by protecting the data from improper use or disclosure is essential. If the patients are told that providing their socioeconomic and demographic data will result in more translation services or community prevention programs, then these should be implemented. DHHS should work with industry agents and legal experts to develop the information to be given to individuals who are asked to provide the data.
RECOMMENDATION 6-2: DHHS should provide leadership in developing standards for collecting data on race, ethnicity, socioeconomic position, and acculturation and language use by health insurers, hospitals, and private medical groups.
As noted throughout this chapter, only very limited data on race and ethnicity are typically collected in private-sector health care information systems. Implementation of this report’s recommendations would greatly enhance the data infrastructure available for understanding and eliminating disparities. However, if these recommendations cannot be implemented such that high-quality data are produced, linking aggregate-level data on race, ethnicity, SEP, and language use may be needed to bridge the gaps. In general, provider, hospital, and insurance claim forms contain the claimant’s address. The Bureau of the Census provides aggregated data on race, ethnicity, and SEP for census geographical units (Zip Code tabulation areas, tracts, or block groups), and these aggregated data, when geographically linked with data from private-sector records, can be used as proxies for individual data on race, ethnicity, or SEP.
Two technical issues are critical to implementation of such linkages. First, software must be used to link addresses to census geographical units. Second, census data must be linked to the addresses, with suitable protections for confidentiality. If the data will be disseminated beyond the plan for research purposes, the second step requires special care because the