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Designing for Patient Voice in Interactive Health

Yuhao Sun

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.

Designing for Patient Voice in Interactive Health

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.

Paper Structure

This paper contains 8 sections, 1 figure.

Table of Contents

  1. Introduction
  2. Patient Voice as an Epistemic Category
  3. Defining Patient Voice Broadly
  4. Barriers in Current Structures
  5. Learning from Other Health Venues
  6. An Open Structural Proposal
  7. Other Possible Views
  8. Future Directions

Figures (1)

  • Figure 1: A conceptual framing of an alternative knowledge infrastructure in IH, outlining key infrastructural components through which such accounts can be expressed, reviewed, and shared as epistemically valid contributions. The figure summarises Section \ref{['sec3-proposal']}.