Patient partners in health research: The ethical and epistemological issues to take into account for a successful collaboration (notice n° 553710)
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| fixed length control field | 02135cam a2200277 4500500 |
| 005 - DATE AND TIME OF LATEST TRANSACTION | |
| control field | 20250121121222.0 |
| 041 ## - LANGUAGE CODE | |
| Language code of text/sound track or separate title | fre |
| 042 ## - AUTHENTICATION CODE | |
| Authentication code | dc |
| 100 10 - MAIN ENTRY--PERSONAL NAME | |
| Personal name | Bogaert, Brenda |
| Relator term | author |
| 245 00 - TITLE STATEMENT | |
| Title | Patient partners in health research: The ethical and epistemological issues to take into account for a successful collaboration |
| 260 ## - PUBLICATION, DISTRIBUTION, ETC. | |
| Date of publication, distribution, etc. | 2023.<br/> |
| 500 ## - GENERAL NOTE | |
| General note | 2 |
| 520 ## - SUMMARY, ETC. | |
| Summary, etc. | Advocated in the name of health democracy, the participation of patient partners in research projects is increasingly considered to be good practice and even an ethical obligation. However, at the current time, patient partners continue to occupy an uncertain place and their participation is often accused of being symbolic. In this contribution, we will elaborate the ethical and epistemological issues that need to be resolved in order to achieve a successful collaboration. We will in particular focus on three points. First, we will discuss the charge that patient involvement in the research process may infringe on academic freedom, due to a conflict of interpretation between patients and scientists, but also due to the patients’ links or conflicts of interest. We then address the problem of representation: whether or not individual patients can be representative of a larger patient population, and what this implies for the quality of a study. We will question whether or not remunerating patient partners can mitigate this problem. Finally, we will analyze whether participation can be harmful to the individual involved, and if so, what we can do to alleviate this harm. |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | health democracy |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | academic freedom |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | representativity |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | epistemic contribution |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | patient partners |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | health democracy |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | academic freedom |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | representativity |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | epistemic contribution |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | patient partners |
| 786 0# - DATA SOURCE ENTRY | |
| Note | Revue française d'éthique appliquée | o 13 | 2 | 2023-04-07 | p. 131-142 | 2494-5757 |
| 856 41 - ELECTRONIC LOCATION AND ACCESS | |
| Uniform Resource Identifier | <a href="https://shs.cairn.info/journal-revue-francaise-d-ethique-appliquee-2022-2-page-131?lang=en&redirect-ssocas=7080">https://shs.cairn.info/journal-revue-francaise-d-ethique-appliquee-2022-2-page-131?lang=en&redirect-ssocas=7080</a> |
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