Designing for Patient Voice in Interactive Health
Fuente:
arXiv
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| Autor principal: | |
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| Formato: | Preprint |
| Publicado: |
2026
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| Materias: | |
| Acceso en línea: | |
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| _version_ | 1866914439368802304 |
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| author | Sun, Yuhao |
| author_facet | Sun, Yuhao |
| contents | Interactive Health (IH) research increasingly engages patients through participatory and user-centred approaches. However, patients' lived experiences are typically treated more as data to be analysed than as knowledge in their own right. In this paper, I argue that 'patient voice' in the field of IH is both an inclusion issue and an epistemic one. More specifically, it concerns how experiential accounts are recognised and circulated. I examine how methodological conventions, authorship norms, review criteria, and publication formats tend to position patients as participants rather than as authors of evidence. Looking to patient-partnered practices in medical publishing, including The BMJ, JAMA, and British Journal of Sports Medicine, I outline a possible infrastructural pathway for supporting patient-authored or patient-led experiential contributions within the field. I present this as a design probe to surface assumptions and trade-offs. I end this paper by inviting the IH community to reflect on how its knowledge infrastructures might accommodate experiential evidence alongside established research forms. |
| format | Preprint |
| id |
arxiv_https___arxiv_org_abs_2604_01558 |
| institution | arXiv |
| publishDate | 2026 |
| record_format | arxiv |
| spellingShingle | Designing for Patient Voice in Interactive Health Sun, Yuhao Human-Computer Interaction Interactive Health (IH) research increasingly engages patients through participatory and user-centred approaches. However, patients' lived experiences are typically treated more as data to be analysed than as knowledge in their own right. In this paper, I argue that 'patient voice' in the field of IH is both an inclusion issue and an epistemic one. More specifically, it concerns how experiential accounts are recognised and circulated. I examine how methodological conventions, authorship norms, review criteria, and publication formats tend to position patients as participants rather than as authors of evidence. Looking to patient-partnered practices in medical publishing, including The BMJ, JAMA, and British Journal of Sports Medicine, I outline a possible infrastructural pathway for supporting patient-authored or patient-led experiential contributions within the field. I present this as a design probe to surface assumptions and trade-offs. I end this paper by inviting the IH community to reflect on how its knowledge infrastructures might accommodate experiential evidence alongside established research forms. |
| title | Designing for Patient Voice in Interactive Health |
| topic | Human-Computer Interaction |
| url | https://arxiv.org/abs/2604.01558 |