Engagement with publics, patients, and stakeholders is an important part of the health research environment today,and different modalities of ‘engaged’ health research have proliferated in recent years. Yet, there is no consensus on what, exactly, ‘engaging’ means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which ‘value’ can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. Especially, translating feminist tools of reflexivity and positionalityinto the sphere of engagements can enable a synergy of empirical, epistemic and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.
As researchers, institution-wide regulatory and organisational cultures guide our work. Over the past two decades, University Research Ethics Committees have been formally established across social science disciplines. However, the functioning of these committees has not been without critique. It is often argued that established ethical procedures informed by the medical sciences do not fit well with the more iterative epistemologies and unpredictable practices of doing social fieldwork. In this paper, I contribute to these discussions by considering what a further framework, a 'culture of care', might offer to university research ethics. A culture of care has evolved in contexts like the National Health Service (NHS) and animal research, and makes central claims around support, openness, collaboration and relationships. Bringing this to research ethics, I explore experiences of care through moments of friction in doing fieldwork with people living with Motor Neurone Disease. Identifying gaps between the institutional, personal and relational, I tentatively suggest some key features that a culture of care for research ethics might seek to develop. These discussions are also timely. Wider conversations emerging around reimagining research cultures in higher education provide an opportune moment to consider what a reimagined research ethics might look like and offer too.
Engagement with publics, patients, and stakeholders is an important part of the health research environment in the UK and beyond today, and different ‘engaged’ health research modalities have proliferated in recent years. Yet, the conceptual landscape currently surrounding engagement is contested. There is no consensus on what, exactly, ‘engaging’ means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which ‘value’ can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and kinds of value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. This will enable a synergy of empirical, epistemic, and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.
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