are used to improve instruction (National Education Goals Panel, 1997). Nevertheless, it is unlikely that state education departments will participate in linking their datasets with those in other departments as long as they are unsure of the interpretation of the law and this exception. Sharing of education data and health data collected in schools (e.g., school-based health centers, school nurses) could be facilitated with an amendment to clarify that student data can be used for research and planning when they (1) benefit the health and well-being of students and (2) confidentiality is protected.

Some state Medicaid programs also cite Section 1092 (a) (7) of the Social Security Act as limiting the sharing of Medicaid data with individual identifiers. This section limits the use of individually identifiable Medicaid data to purposes directly connected with the administration of Medicaid. Some Medicaid programs believe that linking data helps in meeting the needs of their participants and improving programs and do not see this as a barrier, while others take a more restrictive view.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) also raised concerns about sharing individual data. The final rule required health plans, health care clearinghouses, and health care providers who conduct certain financial and administrative transactions electronically to disclose how they will (1) use, store, and share health information; (2) ensure patient accessibility to their medical records; and (3) obtain patient consent before releasing patient information (U.S. Department of Health and Human Services, 2003). The act establishes mandatory procedures for the linkage of data sets. Although HIPPA is explicit about covered health entitities under the law, very little reference was made to uncovered entitites, especially those in public health departments. All state public health mandated data systems, such as registries and communicable disease reporting systems, must include all relevant cases in the dataset.

Informed Consent

Linkages that do not remove identifiers can be desirable for purposes of care management. In these situations, the goal of linking the data is to allow relevant service providers to know what other service sectors are involved in an individual’s care. In these situations, the balance of individual interests with public interests (for example, to save money, avoid duplication of services) may become more complex. These issues are sometimes handled by suggesting that consent be obtained for such linkages.

In order for consent to be informed, parents must be told and must understand who will have access to the data, how they will be used, and any risks associated with their child’s data being in the system. Parents must also be assured that no negative action will occur if they refuse consent. Consent forms can be designed to have a list of data elements that can be shared and those that are not to be released. A critical question is whether a parent can consent for a child,



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