University of Sussex Business School, University of Sussex, Brighton, UK.
School of Humanities and Social Science, University of Brighton, Brighton, UK.
Soc Sci Med. 2023 Nov;337:116307. doi: 10.1016/j.socscimed.2023.116307. Epub 2023 Oct 12.
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.
公民和服务用户的参与在研究、政策和技术发展中越来越普遍。随着这一发展，社会科学家越来越多地被纳入大规模的研究和创新项目中，以促进参与空间的形成。这需要反思参与的机制、结果，最终还有问责制。在本文中，我们提出了关怀框架的视角来处理这些反思。我们通过使用它来解释我们在作为一个欧洲地平线 2020 资助的研究和创新项目“EmERGE”中建立参与空间的角色，来说明其价值。我们描述了我们开发和实施的共同设计过程，旨在使异构的声音、不同的经验和多种想法得以表达，为开发和实施一个用于艾滋病毒护理的数字平台提供信息。我们展示了关怀框架如何使我们能够根据患者/公民角色、邀请/不邀请空间以及包容性/科学主义声音之间的先前理论区别来审视参与，并提供新的探究线来捕捉数字健康创新中参与的关系和涌现过程。在“EmERGE”项目中，参与空间是在社区内部和由社区共同创造的，社区成员巧妙地安排了物质、社会和时间的设置。在这些空间中，我们能够表达声音、审议知识并研究技术的潜力，从而挑战最初通过信息推送实现赋权的技术铭文，并最终取代数字艾滋病毒护理中更具互动性的临床医生-患者参与形式。通过关怀视角，本文旨在为参与参与性项目的设计、实施和评估的研究人员和从业者提供一个反思性工具。
