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Drawing upon ethnographic observations of staff working within a research laboratory built around research and clinical data from twins, this article analyzes practices underlying the production and maintenance of a research database. While critical data studies have discussed different forms of 'data work' through which data are produced and turned into effective research resources, in this paper we foreground a specific form of data work, namely the affective and attentive relationships that humans build with data. Building on STS and feminist scholarship that highlights the importance of care in scientific work, we capture this specific form of data work as care. Treating data as relational entities, we discuss a set of caring practices that staff employ to produce and maintain their data, as well as the hierarchical and institutional arrangements within which these caring practices take place. We show that through acts of caring, that is, through affective and attentive engagements, researchers build long-term relationships with the data they help produce, and feel responsible for its flourishing and growth. At the same time, these practices of care - which we found to be gendered and valued differently from other practices within formal and informal reward systems - help to make data valuable for the institution. In this manner, care for data is an important practice of valuation and valorisation within data-intensive research that has so far received little explicit attention in scholarship and professional research practice.

Background: Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself., Aims: To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means., Methods: We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis., Results and Conclusions: We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics' concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed.

Patient and public involvement in health research has been promoted by the United Kingdom's Department of Health and its research funding agencies for at least a decade. The policy rhetoric through which it is promoted is based on the idea that patients' experiential knowledge can be harnessed to improve the quality and relevance of health research. This paper uses the comparative case of post-colonial critiques of anthropology to propose ways of thinking about the implicit and explicit claims underpinning assumptions about experiential knowledge. It focuses on three areas of debate: insider knowledge and authenticity; objectivity/subjectivity; and ethical and political engagement.

Background: Implementing major system change in healthcare is not well understood. This gap may be addressed by analysing change in terms of interrelated components identified in the implementation literature, including decision to change, intervention selection, implementation approaches, implementation outcomes, and intervention outcomes.Methods: We conducted a qualitative study of two cases of major system change: the centralisation of acute stroke services in Manchester and London, which were associated with significantly different implementation outcomes (fidelity to referral pathway) and intervention outcomes (provision of evidence-based care, patient mortality). We interviewed stakeholders at national, pan-regional, and service-levels (n = 125) and analysed 653 documents. Using a framework developed for this study from the implementation science literature, we examined factors influencing implementation approaches; how these approaches interacted with the models selected to influence implementation outcomes; and their relationship to intervention outcomes.Results: London and Manchester's differing implementation outcomes were influenced by the different service models selected and implementation approaches used. Fidelity to the referral pathway was higher in London, where a 'simpler', more inclusive model was used, implemented with a 'big bang' launch and 'hands-on' facilitation by stroke clinical networks. In contrast, a phased approach of a more complex pathway was used in Manchester, and the network acted more as a platform to share learning. Service development occurred more uniformly in London, where service specifications were linked to financial incentives, and achieving standards was a condition of service launch, in contrast to Manchester. 'Hands-on' network facilitation, in the form of dedicated project management support, contributed to achievement of these standards in London; such facilitation processes were less evident in Manchester.Conclusions: Using acute stroke service centralisation in London and Manchester as an example, interaction between model selected and implementation approaches significantly influenced fidelity to the model. The contrasting implementation outcomes may have affected differences in provision of evidence-based care and patient mortality. The framework used in this analysis may support planning and evaluating major system changes, but would benefit from application in different healthcare contexts. [ABSTRACT FROM AUTHOR]

Background: Lay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement. Aim: To assess stroke survivors’ research awareness, use of research evidence in their own care and readiness to be involved in research processes. Methods: Cross sectional survey of stroke survivors participating in population‐based stroke registers in six European centres. Results: The response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to ‘give something back’ (19%); however, 20% were unaware that they were participating in a stroke register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware. Conclusions: Across Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care. [ABSTRACT FROM AUTHOR]

Discusses the potential contribution of anthropology to health research. Suggestion that emphasis on methods in health related qualitative research obscures the value of substantive knowledge and theoretical concepts based in some social sciences; Focus of anthropology on classification and on understanding rationality in social and cultural context; Emphasis on empirical particularity which helps avoid inaccurate generalizations.

In this article, the authors argue that the process for getting research ethics and governance approval in Great Britain remains affected by delay and arbitrary decisions. The authors describe their experience of using the Great Britain National Institute of Health Research Coordinated System for gaining National Health Service (NHS) Permission (NIHR CSP) to get research governance approval. They explain the delays that they have encountered during the process. They argue that although NIHR CSP slightly improved the process of getting research ethics and governance approval, problems still exist at the local level.

This paper describes an Experience-based Co-design (EBCD) project that aimed to increase patient activity within an acute stroke unit. We apply the concept of liminality to explore ways in which the EBCD process, a form of Participatory Action Research, may dilute or even dissolve social hierarchies and challenge assumptions about practices and constraints in this care setting, thereby opening up possibilities for transformation that enhances the therapeutic value of the space for patients and care providers alike. By occasioning a liminal phase of possibility for change, the work of one co-design group explored in detail here suggests that, in this process, the sociomaterial interactions involving patients, family members, staff, and the physical space are refashioned and re-inscribed in transformed 'emplaced' relationships of care. [ABSTRACT FROM AUTHOR]