Co-design with affect stories and applied ethics for health technologies
The integration of digital health technologies in clinical practices and everyday lives of patients raises several issues. Some of them are related to applied ethics. Co-design with patients and, more generally, participatory approaches are increasingly seen as a way to tackle these issues early in...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2024-03-01
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| Series: | Frontiers in Communication |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fcomm.2024.1327711/full |
| _version_ | 1797242875044429824 |
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| author | Ambre Davat Ambre Davat Fabienne Martin-Juchat Fabienne Martin-Juchat Thierry Ménissier Thierry Ménissier |
| author_facet | Ambre Davat Ambre Davat Fabienne Martin-Juchat Fabienne Martin-Juchat Thierry Ménissier Thierry Ménissier |
| author_sort | Ambre Davat |
| collection | DOAJ |
| description | The integration of digital health technologies in clinical practices and everyday lives of patients raises several issues. Some of them are related to applied ethics. Co-design with patients and, more generally, participatory approaches are increasingly seen as a way to tackle these issues early in the innovation process. This opens the way to an “ethics by co-design.” In this article, we will present the high ambitions of this approach and discuss three challenges raised by ethics by co-design. We will argue that a co-design approach based on affect stories is a way to address these challenges. Then we will focus on a concrete example of a European research project, to discuss the gap between these ethical and theoretical ambitions and what can be achieved in practice. This project aimed at developing an implantable connected device for the monitoring of heart failure, while addressing the ethical, legal and social issues raised by this new technology. However, co-design with patient representatives was in fact limited to a small part of the project: the design of an information module. Based on 18 meetings with a team of 4 patient partners, and 26 additional interviews with patients, we were able to better understand patients’ experiences and priorities in terms of ethics. Together, we co-designed an information module that embodies a vision of the device negotiated between the patients and the technology designers. |
| first_indexed | 2024-04-24T18:46:10Z |
| format | Article |
| id | doaj.art-43b5736fa33f48fba1c459e2efcc0401 |
| institution | Directory Open Access Journal |
| issn | 2297-900X |
| language | English |
| last_indexed | 2024-04-24T18:46:10Z |
| publishDate | 2024-03-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Communication |
| spelling | doaj.art-43b5736fa33f48fba1c459e2efcc04012024-03-27T05:04:56ZengFrontiers Media S.A.Frontiers in Communication2297-900X2024-03-01910.3389/fcomm.2024.13277111327711Co-design with affect stories and applied ethics for health technologiesAmbre Davat0Ambre Davat1Fabienne Martin-Juchat2Fabienne Martin-Juchat3Thierry Ménissier4Thierry Ménissier5GRESEC, Grenoble Alpes University, Grenoble, FranceEthics and AI Chair, Multidisciplinary Institute in Artificial Intelligence (MIAI), Grenoble Alpes University, Grenoble, FranceGRESEC, Grenoble Alpes University, Grenoble, FranceEthics and AI Chair, Multidisciplinary Institute in Artificial Intelligence (MIAI), Grenoble Alpes University, Grenoble, FranceEthics and AI Chair, Multidisciplinary Institute in Artificial Intelligence (MIAI), Grenoble Alpes University, Grenoble, FranceIPHIG, Grenoble Alpes University, Grenoble, FranceThe integration of digital health technologies in clinical practices and everyday lives of patients raises several issues. Some of them are related to applied ethics. Co-design with patients and, more generally, participatory approaches are increasingly seen as a way to tackle these issues early in the innovation process. This opens the way to an “ethics by co-design.” In this article, we will present the high ambitions of this approach and discuss three challenges raised by ethics by co-design. We will argue that a co-design approach based on affect stories is a way to address these challenges. Then we will focus on a concrete example of a European research project, to discuss the gap between these ethical and theoretical ambitions and what can be achieved in practice. This project aimed at developing an implantable connected device for the monitoring of heart failure, while addressing the ethical, legal and social issues raised by this new technology. However, co-design with patient representatives was in fact limited to a small part of the project: the design of an information module. Based on 18 meetings with a team of 4 patient partners, and 26 additional interviews with patients, we were able to better understand patients’ experiences and priorities in terms of ethics. Together, we co-designed an information module that embodies a vision of the device negotiated between the patients and the technology designers.https://www.frontiersin.org/articles/10.3389/fcomm.2024.1327711/fullethicsparticipatory approachesco-designaffect storieshealth technologieshealth innovation |
| spellingShingle | Ambre Davat Ambre Davat Fabienne Martin-Juchat Fabienne Martin-Juchat Thierry Ménissier Thierry Ménissier Co-design with affect stories and applied ethics for health technologies Frontiers in Communication ethics participatory approaches co-design affect stories health technologies health innovation |
| title | Co-design with affect stories and applied ethics for health technologies |
| title_full | Co-design with affect stories and applied ethics for health technologies |
| title_fullStr | Co-design with affect stories and applied ethics for health technologies |
| title_full_unstemmed | Co-design with affect stories and applied ethics for health technologies |
| title_short | Co-design with affect stories and applied ethics for health technologies |
| title_sort | co design with affect stories and applied ethics for health technologies |
| topic | ethics participatory approaches co-design affect stories health technologies health innovation |
| url | https://www.frontiersin.org/articles/10.3389/fcomm.2024.1327711/full |
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