Protecting Student Records and Facilitating Education Research A Workshop Summary (2009) / Chapter Skim
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5 Reconciling Access and Confidentiality in Federal Statistical and Health Data
5 Reconciling Access and Confidentiality in Federal Statistical and Health Data
Pages 51-74
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From page 51... ...
integrating administrative data into census bureau programs Gerald Gates explained that his years at the Census Bureau as a privacy officer and earlier as an administrative records program officer had made him aware that privacy is "the key issue" in obtaining access to administrative records and sharing them with researchers. On the basis of his understanding of laws, regulations, and current practices, he outlined three fundamental principles for statistical use of administrative 51
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. Moving to more practical issues, Gates observed that it is "hard to get these data," requiring negotiations among lawyers, program managers, policy advisers, and institutional review boards in order to reach agreements on data sharing.
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Postal Service, making it a very valuable resource. The Census Bureau launched the Longitudinal Employer Household Dynamics Program in 1999 to integrate census, survey, and administrative records data on workers and employers, including state unemployment insurance wage records.
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Its goal is to examine "perplexing" discrepancies between estimates of Medicaid enrollment from population surveys and enrollment counts from the Medicaid program's own administrative data. Protecting Privacy and Confidentiality of Administrative Data Gates said that the key challenge in obtaining administrative data for statistical activities and research access is to protect privacy and confidentiality.
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Options for Public Use Without Restrictions Traditionally, the Census Bureau and other federal statistical agencies have made survey data and some types of administrative data available in the form of "public-use microdata systems," and these data sets continue to meet the needs of most researchers today, Gates said. To protect these data against an intruder who might try to identify one or more individuals, the public-use microdata systems include only a sample of records.
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For example, the National Opinion Research Center has created a "data enclave," with data sets from the National Institute of Standards and Technology and other sources and conducts analyses of these data at the request of approved researchers. The National Center for Health Statistics provides access to approved researchers by e-mail through the Analytic Data Research by E-mail (ANDRE) system and has also created a virtual research data center. Remote access options have the advantage of providing easy access to administrative data sets by e-mail or the Internet.
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Second, although all parties who have access to administrative records have a great incentive to protect confidentiality, they are not all equally liable for any possible breach of confidentiality. Third, access is affected by increased public scrutiny of privacy protections, which leads to development of new data stewardship principles and policies.
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The Common Rule was designed to protect human subjects in a research environment, assumes that prior informed consent is fundamental, and uses a "reasonable" standard for protection. In contrast, FERPA was designed to protect students and their families in an educational environment, does not assume prior informed consent, and has "a much more absolute standard for protection." Despite these differences in the law and regulations, he said, in reality, researchers do obtain informed consent for the use of school records, but they get this consent from school administrators, rather than from parents or students.
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differentiates between technical and institutional options for protecting confidentiality. Technical options include replacing real data with synthetic data for potentially identifying attributes and creating
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Institutional options vary, based on the perceived level of risk of disclosure; more complex options are more expensive and make research more difficult. For example, Gutmann said, the University of Michigan houses one of the nine research data centers operated by the Census Bureau.
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In compliance with FERPA, the investigators received individual written consent from each student in order to obtain access to the transcripts from their schools. To access these national data sets, a researcher must receive approval from the institutional review board at her or his home institution and provide a data security plan.
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In response to a question, Gutmann said he did not know of any studies about obtaining retrospective consent. Levine said that the process for obtaining a waiver of the informed consent requirement of the Common Rule from an institutional review board was well understood and used to facilitate research.
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permits health care provider organizations to disclose individually identifiable health information for research purposes only if the researcher has obtained written consent from each patient or, if that is impractical, a waiver of this requirement from an institutional review board. Although the rule does permit health care providers to disclose limited data sets with all identifiers removed to researchers who sign a formal data use agreement, Ness said that these data sets cannot be linked to any other medical records and are not useful for research.
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First, the survey presented questions with quantitative responses, such as such as how frequently respondents collected various types of data, changes in the numbers of participants recruited before and after implementation of the Privacy Rule, and the level of difficulty encountered when seeking waivers or approval for release of deidentified data sets from the institutional review board. A second group of questions focused on respondents' perceptions of the ease and difficulty of conducting research under the HIPAA Privacy Rule and its impact on privacy and confidentiality, using a 5-point Likert scale.
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She said that about 15 percent of respondents indicated that, although their research proposals were approved by the institutional review board, the health care organization holding the medical records would not allow access because of Privacy Rule concerns. An additional 11.5 percent of epidemiologists surveyed had conceived of a study but not submitted it to an institutional review board because they thought they would be unable to obtain approval due to the Privacy Rule.
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317 (26.7) another hospital; research cannot be done without some identifiers NOTE: IRB = institutional review board.
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Among all respondents, the rule was seen as having a more negative than positive impact on the protection of human subjects. The analysis of the responses suggests that institutional review boards around the nation interpret the rule in quite different ways, making it unclear whether many of the problems described in the survey are a function of the Privacy Rule itself or local institutional review board interpretation of it.
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In one effort to answer this question, his agency awarded grants to support health care information technology systems for "enabling quality measurements." In addition, the Department of Health and Human Services' Center for Medicare and Medicaid Services funded six regional pilot projects to provide better quality information for Medicare beneficiaries. White provided an example to illustrate a key issue in using administrative -- or in this case, electronic claims -- data to assess health care quality.
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With the change to digital records, it is possible for many individuals and organizations to own copies of health care records. White explained that he and his colleagues use the word "stewardship," which he defined as "taking care of something that doesn't belong to you." He has been engaged in discussions of health data stewardship with many organizations over the past few years, including the Ambulatory Quality Alliance, the National Committee on Vital and Health Statistics, which advises the Secretary of Health and Human Services, and the American Medical Informatics Association.
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; • ublic reporting to consumers of user-friendly, meaningful, and p actionable information about physician quality and cost of care; and • he collection of both public and private data so that physician t performance can be assessed as comprehensively as possible. White explained that, as the Ambulatory Quality Alliance members discussed these principles, they reached agreement on the need for a new health care data stewardship entity.
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White said that such proposals miss the possibility of using medical records for research that could improve the health care system for the public good. discussion: implications for research using education records Reflecting on Lizanne DeStefano's earlier presentation about development of partnerships between researchers and schools (see Chapter 4)
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She observed that researchers outside her team who wish to use the file are required to apply to their own institution's institutional review board and to the state of Michigan's institutional review board for the use of data, providing a data protection plan along with other information about the proposed research. DeStefano and others agreed that researchers should provide technical assistance to state and local education agencies to increase their capacity in techniques of deidentification.
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Gutmann responded that institutional review boards do not always take advantage of the flexibility they have to allocate their time and resources. For example, the University of Michigan institutional review board has explicit rules stating that research proposals to use data from a list of specific deidentified public data sources (including the Census Bureau, his institute, and other sources)
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. DeStefano said that, in the partnership model, education agencies and researchers discuss the specific benefits of particular research projects, rather than considering the general benefits of research to society; she observed that the University of Illinois institutional review board had made note of these specific benefits when reviewing research partnership proposals.
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