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Studies of Welfare Populations: Data Collection and Research Issues
and marriage certificates to understand lifetime outcomes of family recomposition and participation in service programs. Researcher access to administrative data is beneficial, and more open access will permit individuals to educate themselves about what is contained in such databases, to use the information within those databases to conduct research for multiple purposes, and to reassure the public about the feasibility of using already gathered information for the public good.
Concerns over confidentiality continue to present a major barrier to linking administrative data to evaluate the effects of welfare reform on child well-being. Perhaps nowhere is there as much sensitivity concerning privacy and confidentiality as with records containing information about vulnerable children and parents who have been accused of violating social norms by abusing or neglecting their children. At the same time, electronic availability of information on individuals permits sophisticated research that was simply impossible in the past. How do we reconcile the need to provide privacy and confidentiality to individual patients while enabling public health researchers and policy makers to use available information to make the best decisions?
Although privacy and confidentiality of records about children’s well-being are important, we suggest there are already adequate protections, incentives and disincentives, and policies and procedures, to preserve individual privacy. We already trust millions of individuals in our society to respect the confidentiality of information they encounter each day in the human services, child welfare, health care, law enforcement, juvenile justice, and education sysem, to name a few. We trust the individuals conducting research within each of these systems to maintain the confidentiality of records. Most of these data are collected without any explicit discussion of whether or how they will be used for research that might inform administration of the program. Yet we have generated the expectation that individuals not working for those institutions who obtain data from them in order to advance services research through data linking represent a risk to the confidentiality concerns of service recipients. The expectation that there is likely to be even a minimal risk of mishandling data lacks an evidentiary base. In our 10 years of experience using administrative data of the most sensitive kinds (including child abuse reports and juvenile justice records), we know of no violations of individual rights of persons in those data sets. Nor do we have any stories to tell about exceptional procedures we instituted to prevent such misuse. The handling of that information was simply very routine. Perhaps we need a more systematic effort to determine what real and imagined threats to confidentiality exist in datalinking efforts. Until we have evidence to the contrary, we should continue to maintain databases with adequate identifying information to support future research projects, and we should advocate for change in unwisely broad legislative or regulatory language that adversely affects interorganizational research.
We believe it is appropriate and indeed necessary to maintain personal identifying information on public health and child well-being databases, and that those identifiers should be available to facilitate linkage of electronic health