Research with a Solidarity Clinic: Design Implications for CSCW Healthcare Service Design (original) (raw)
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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 largescale 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 setup. 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.
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Design for Health, 2019
Design research and practice have multiple roles to play in articulating social and political issues related to public health. One such opportunity exists in interdisciplinary collaborations that extend beyond "design" and "health" disciplines and include historical methods of collection and interpretation. This article dissects the intentions and design-enabled methods behind an ongoing public history project on American women living with HIV. Participatory design methods and practical design methods have played distinct roles in the project. Maintaining a distinction between the two has helped leverage the value of both. Meanwhile, partnering participatory design with public history has generated a variety of hybrid methods for working with a marginalized community. These methods have operated to identify structural barriers to health-without eviscerating personal experiences of those barriers-in direct collaboration with participants whose medical status has a stigmatizing social impact. This case study is situated against shifting American political dynamics related to HIV/AIDS. Finally, the case study's layered approach is cast as a translational model of design research. This model is defined by the integration of basic research, applied interdisciplinary research, and community-engaged advocacy-all of which are activated through the interplay of design research and design practice.
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