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Participation through the lens of care: Situated accountabilities in the codesign of a digital health platform for HIV care

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  • Marent, Benjamin
  • Henwood, Flis
  • Darking, Mary

Abstract

Participation of citizens and service users is increasingly commonplace in research, policy and technology development. Alongside this development, social scientists have become increasingly incorporated into large-scale research and innovation projects to facilitate participatory spaces. This requires reflection on the mechanisms, outcomes and, ultimately, the accountabilities of participation. In this paper, we propose the lens of care framework for approaching such reflections. We illustrate its value by using it to account for our role in establishing participatory spaces as part of a European Horizon 2020-funded research and innovation project, entitled EmERGE. We describe the codesign processes we developed and implemented with the aim of enabling heterogeneous voices, distinct experiences and multiple ideas to be articulated to inform the development and implementation of a digital platform for HIV care. We show how the lens of care framework enables us to trouble participation along prior theoretical distinctions between patients/citizens roles, invited/uninvited spaces and inclusive/scientistic voices and provides novel lines of inquiry to capture the relational and emergent processes of participation in digital health innovation. In the EmERGE project, spaces of participation were co-created within and by the community, whose members skilfully arranged the material, social and temporal set-up. Within these spaces we were able to articulate voices, deliberate knowledge and study the potentialities of technology so that initial technological inscriptions of empowerment through information-push were challenged and were, eventually, replaced by more interactive forms of clinician-patient engagement in digital HIV care. Through the lens of care, this paper aims to provide a reflective tool for researchers and practitioners who are involved in the design, implementation, and evaluation of participatory projects.

Suggested Citation

  • Marent, Benjamin & Henwood, Flis & Darking, Mary, 2023. "Participation through the lens of care: Situated accountabilities in the codesign of a digital health platform for HIV care," Social Science & Medicine, Elsevier, vol. 337(C).
  • Handle: RePEc:eee:socmed:v:337:y:2023:i:c:s0277953623006640
    DOI: 10.1016/j.socscimed.2023.116307
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    References listed on IDEAS

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    1. Tenbensel, Tim, 2010. "Virtual special issue introduction: Public participation in health policy in high income countries - A review of why, who, what, which, and where?," Social Science & Medicine, Elsevier, vol. 71(9), pages 1537-1540, November.
    2. Marent, Benjamin & Henwood, Flis & Darking, Mary, 2018. "Ambivalence in digital health: Co-designing an mHealth platform for HIV care," Social Science & Medicine, Elsevier, vol. 215(C), pages 133-141.
    3. Francisco J. Gárate & Paloma Chausa & Jennifer Whetham & Christopher Iain Jones & Felipe García & César Cáceres & Patricia Sánchez-González & Edward Wallitt & Enrique J. Gómez & on behalf of the EmERG, 2021. "EmERGE mHealth Platform: Implementation and Technical Evaluation of a Digital Supported Pathway of Care for Medically Stable HIV," IJERPH, MDPI, vol. 18(6), pages 1-15, March.
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