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Studies of Welfare Populations: Data Collection and Research Issues
In a very ambiguous and unclear legal environment, states nevertheless have found ways to provide researchers with data, but it is a difficult process requiring strong leadership, adequate staff, extensive negotiations over confidentiality and security, and trust between the data-requesting and data-providing organizations. It also requires that data-providing organizations believe that they are obtaining substantial benefits from providing their data to researchers. In some cases, the benefits follow because the state has contracted with the researchers, but in other cases researchers must find ways to convince agencies that their research will be helpful to the agency itself.
All in all, the situation for research uses of administrative data is precarious. The laws are unclear about whether data can be used for research. Agencies are only sometimes convinced that research is in their best interests. Coordinating and convincing many different agencies is a difficult task. An obvious solution would be to develop a better legal framework that would recognize the smaller risks of data disclosure from datalinking for research, but before this can be done, researchers have to develop a menu of technical and institutional solutions to the problems of data confidentiality.
TECHNICAL AND INSTITUTIONAL SOLUTIONS
There are two basic ways to limit disclosure, data alteration, and restricted access to data. The recent National Research Council (2000) report on “Improving Access to and Confidentiality of Research Data” notes the strengths and weaknesses of each method:
Data alteration allows for broader dissemination, but may affect researchers’ confidence in their modeling output and even the types of models that can be constructed. Restricting access may create inconveniences and limit the pool of researchers that can use the data, but generally permits access to greater data detail (29).
“Anonymizing” data by removing identifying information is one method of data alteration, but this procedure may not limit disclosure enough. Data alteration can be thought of as a more versatile and thorough collection of methods for reducing the risk of disclosure.
Requiring informed consent for the use of data can be thought of as an institutional method for restricting access, but it may be impractical or it may be inadequate in many cases. Once data have been collected in an administrative system, it is nearly impossible to go back and obtain informed consent, but perhaps more importantly, informed consent might not really serve the purposes of individuals who cannot easily judge the costs and benefits of the various ways data might be used. We discuss some institutional methods such as Confidential