Abstract
Patient expertise does not lie solely in the production of knowledge about diseases or about daily medical experiences of illness (e.g. post-treatment, pain and side effects, psychological distress, etc.). Patients also develop sets of knowledge regarding everyday life with and after illness, especially with regards to socio-economic harm. Internet and social media can be mobilized by patients and patient organizations not only to learn or communicate about an illness and its consequences, but also to promote political measures aiming to address these. In this paper, our aim is to examine the way in which information about life after an experience of illness is produced and circulates through social media, and the role of patients and patient organizations in this process. To do so, we focus on the case of a recent French policy regulating loan insurance practices with regards to former cancer patients (Convention AERAS).
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Notes
- 1.
The European Union has about 7 million people living at least ten years after a cancer diagnosis, according to the European Cancer Patient Coalition.
- 2.
ELOCAN is funded by the French national cancer institute (Inca) and the Integrated cancer research site (SiRIC) CURAMUS. https://elocan.sorbonne-universite.fr.
- 3.
The complete list can be found in a dedicated repository: https://github.com/rundimeco/right-to-be-forgotten.
- 4.
SVM and deep learning classifiers are not represented in this table since they exhibited worse results, certainly due to the fact that there are too few instances for these algorithms.
- 5.
Exemples of tweets are presented in Annexe 1.
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Debailly, R., Jeaningros, H., Lejeune, G. (2022). Twitter and the Dissemination of Information Related to the Access to Credit for Cancer Survivors. In: Meiselwitz, G. (eds) Social Computing and Social Media: Design, User Experience and Impact. HCII 2022. Lecture Notes in Computer Science, vol 13315. Springer, Cham. https://doi.org/10.1007/978-3-031-05061-9_36
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