Patients as Researchers Chronicity, Health Data, and Emergent Attribution Practices
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Abstract
This article considers how scientists and other researchers frame and integrate online patient registry data into their work. In the case of rare chronic conditions, online patient registry data extend the geographic boundaries that limit research involvement and make efficient use of limited federal funding for research. Through a rhetorical analysis of peer-reviewed journal articles, which I evaluate as artifacts, I show how a selection of them seek to recognize patients’ labor through traditional acknowledgements and provide tangible benefits to patient communities. At the same time, the proliferation of online patient registries and lack of publications suggests that patients’ labor is often overlooked and disregarded. This work reveals how online patient data registries change our understanding and approach to researching chronicity. I conclude by offering ethical considerations for rhetoricians who choose to use and publish data from these registries.
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