of the area in poverty (tract, block, or Zip Code) was the SEP area-based measure that gave the most consistent estimates over different racial, ethnic, and gender groups than other area-based measures of SEP.
Linking across data sets has great potential payoff in terms of increased content coverage over a single source of data. For example, SEP and language data from other data sources could be linked to a data set that does not cover these items, or demographic information or information on health outcomes could be linked to information about health care received. While there may be technical and privacy issues to contend with in the linkage of these data, these issues can be addressed. Linking data sets collected by entities outside DHHS (e.g., by states and the private sector) may be more difficult because data sharing agreements may need to be negotiated and because data formats may be less consistent. However, since many of the data sets available to measure health disparities are within DHHS, some of the burdens of dealing with department cross-agency protections of privacy and confidentiality could be reduced if strong leadership is exercised by the department’s groups and agencies with data collection and coordination responsibilities.
CONCLUSION 3-5: Linkages of data should be used whenever possible, with due regard to proper use and the protection of confidentiality in order to make the best use of existing data without the burden of new data collection.
Improvement of the data systems available to study racial and ethnic disparities in health will impose some additional burdens and costs on data systems. As we stated in the introduction to this report, it is beyond the panel’s charge and would require a special set of expertise to provide a detailed assessment of the costs of these improvements. However, some general principles for collecting costs and reducing burden are discussed in the next chapters of this report. The collection of data on race and ethnicity and some simpler measures of SEP and acculturation and language has proven to be feasible and not difficult, although some of the more complex measures of SEP and acculturation and language use are difficult to collect and may not be practical to collect in every situation. It is true that the collection of these data may require some changes in computer systems, but such changes occur in the normal course of events from time to time and would not be more burdensome in this case. The major costs in collecting these data appear to be at the point of contact—that is, when a patient’s or program enrollee’s information is obtained. These burdens can be reduced, for example, by designing the systems in a way that avoids repeatedly collecting the same information.