Designing for Patient Voice in Interactive Health
arXiv:2604.01558v1 Announce Type: new Abstract: 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 outli
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Abstract: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.
Comments: This paper has been conditionally accepted to the Interactive Health Conference 2026 in Porto, Portugal
Subjects:
Human-Computer Interaction (cs.HC)
Cite as: arXiv:2604.01558 [cs.HC]
(or arXiv:2604.01558v1 [cs.HC] for this version)
https://doi.org/10.48550/arXiv.2604.01558
arXiv-issued DOI via DataCite (pending registration)
Related DOI:
https://doi.org/10.1145/3786579.3804910
DOI(s) linking to related resources
Submission history
From: Yuhao Sun [view email] [v1] Thu, 2 Apr 2026 03:06:17 UTC (65 KB)
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