Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers
Citizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-creation) where a team of professional and citizen sci...
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| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Specialty Publications
2022-05-01
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| Series: | Journal of Participatory Research Methods |
| Online Access: | https://doi.org/10.35844/001c.35634 |
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| _version_ | 1850043307652022272 |
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| author | Nils B. Heyen Johanna Gardecki Daniela Eidt-Koch Miriam Schlangen Sophie Pauly Olaf Eickmeier Thomas Wagner Tanja Bratan |
| author_facet | Nils B. Heyen Johanna Gardecki Daniela Eidt-Koch Miriam Schlangen Sophie Pauly Olaf Eickmeier Thomas Wagner Tanja Bratan |
| author_sort | Nils B. Heyen |
| collection | DOAJ |
| description | Citizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-creation) where a team of professional and citizen scientists jointly plans, implements, and evaluates a scientific study on a chronic disease from which the citizen (patient) scientists themselves suffer. We call this approach patient science; it systematically makes use of the patients' expertise of living with the disease. This article describes the pilot project and conceptual differences compared to other participatory approaches in medical and health research. It elaborates on the implications of involving chronically ill people as co-researchers and, finally, reflects on the benefits and challenges of patient science. |
| format | Article |
| id | doaj-art-a3225b048a0d42ac8066d27dd2ee38fd |
| institution | DOAJ |
| issn | 2688-0261 |
| language | English |
| publishDate | 2022-05-01 |
| publisher | Specialty Publications |
| record_format | Article |
| series | Journal of Participatory Research Methods |
| spelling | doaj-art-a3225b048a0d42ac8066d27dd2ee38fd2025-08-20T02:55:16ZengSpecialty PublicationsJournal of Participatory Research Methods2688-02612022-05-013110.35844/001c.35634Patient Science: Citizen Science Involving Chronically Ill People as Co-ResearchersNils B. HeyenJohanna GardeckiDaniela Eidt-KochMiriam SchlangenSophie PaulyOlaf EickmeierThomas WagnerTanja BratanCitizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-creation) where a team of professional and citizen scientists jointly plans, implements, and evaluates a scientific study on a chronic disease from which the citizen (patient) scientists themselves suffer. We call this approach patient science; it systematically makes use of the patients' expertise of living with the disease. This article describes the pilot project and conceptual differences compared to other participatory approaches in medical and health research. It elaborates on the implications of involving chronically ill people as co-researchers and, finally, reflects on the benefits and challenges of patient science.https://doi.org/10.35844/001c.35634 |
| spellingShingle | Nils B. Heyen Johanna Gardecki Daniela Eidt-Koch Miriam Schlangen Sophie Pauly Olaf Eickmeier Thomas Wagner Tanja Bratan Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers Journal of Participatory Research Methods |
| title | Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers |
| title_full | Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers |
| title_fullStr | Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers |
| title_full_unstemmed | Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers |
| title_short | Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers |
| title_sort | patient science citizen science involving chronically ill people as co researchers |
| url | https://doi.org/10.35844/001c.35634 |
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