Enabling Neighborhood Health Research and Protecting Patient Privacy
2021-08
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Enabling Neighborhood Health Research and Protecting Patient Privacy
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2021-08
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Maps and spatial analysis offer a more comprehensive understanding of complex neighborhood health relationships, and yet there is a remarkable lack of maps within the literature on neighborhood health. Review of the literature confirmed that only a small proportion of articles on neighborhood health (28%) contained maps. Despite this, our subsequent survey showed that the majority (63%) of investigators created maps, worked with maps, or used mapping software to explore their data at some point during their study. Neighborhood health investigators are not neglecting to explore the spatial nature of their data, but rather, they are just not publishing the maps that they are using. One of the major barriers identified by our survey was privacy regulations, such as HIPAA law, which stood as a direct barrier for 14% of survey respondents who created maps but did not share them. Many researchers find core elements of the HIPAA privacy provision specific to map data ambiguous or difficult to understand, which is reflected in disagreement and uncertainty in research and policy circles on how to enact this provision. This dissertation provides a thorough examination of the safe harbor provision and elucidates the ambiguity within the law to encourage safe and effective sharing of mapped patient data. Moreover, many scholars and policy makers have challenged this rule, saying that it is possible to share finer-grained mapped health data without jeopardizing patient privacy. One promising strategy is regionalization, or zone design, which offers a way to build finer-grained geographical units in ways that integrate the HIPAA safe harbor requirements. This dissertation explores two existing regionalization methods (Max P Regions and REDCAP) and also introduces two novel variants of these approaches (MSOM and RSOM) which we compare and contrast in terms of fitness for analysis and display of protected health information. Each regionalization procedure has its own strengths and weaknesses, but REDCAP provides the best overall performance. In general, all of the regionalization procedures produced contiguous regions that result in a better resolution map than the current standard for sharing patient data and offer to help investigators work within the bounds of privacy provisions to share maps and spatial data.
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University of Minnesota Ph.D. dissertation. August 2021. Major: Geography. Advisors: Steven Manson, Michael Oakes. 1 computer file (PDF); vi, 129 pages.
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Krzyzanowski, Brittany. (2021). Enabling Neighborhood Health Research and Protecting Patient Privacy. Retrieved from the University Digital Conservancy, https://hdl.handle.net/11299/225021.
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