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- W4281729530 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." @default.
- W4281729530 created "2022-06-13" @default.
- W4281729530 creator A5068918180 @default.
- W4281729530 date "2022-06-01" @default.
- W4281729530 modified "2023-10-18" @default.
- W4281729530 title "Patients as Researchers" @default.
- W4281729530 doi "https://doi.org/10.5744/rhm.2022.5008" @default.
- W4281729530 hasPublicationYear "2022" @default.
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