Designing for Patient Voice in Interactive Health

TL;DR

This paper advocates for recognizing and integrating patient voices as authors in health research to better reflect lived experiences and improve participatory practices.

Contribution

It proposes infrastructural pathways and design considerations for supporting patient-authored experiential contributions in health research.

Findings

Current practices treat patients as data, not authors.

Examines medical publishing to identify pathways for patient-authored evidence.

Suggests design probes to surface assumptions and trade-offs in knowledge infrastructures.

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.