Abstract:There have long been calls from within both industry and academic groups to reduce the bureaucratisation of clinical trials and make them more 'sensible' , with the focus on approvals and guidelines. Here, I focus on the mundane environments of a multi-centre clinical trial to ask how 'sensible' it is to standardise trials at the level of material objects. Drawing on ethnographic data collected in the UK, South Africa and Vietnam, I present three vignettes of material standardisation. While acknowledging some … Show more
“…The attempt to place data exploitations in a transactional narrative where data extractions to the state, in exchange for NHS services, bifurcated research and care. This prioritised data collections and exploitations at the expense of the local relationships that produce the data (Montgomery ). The use of the NHS was understood as an absolute entitlement of citizenship, independent of any other obligation, and there was a material and affective attachment to the NHS (de la Bellacasa ).…”
Section: Resultsmentioning
confidence: 99%
“…Care.data was, therefore, seen not as a big data scheme that will ultimately benefit people, but one that will also facilitate the demise of the public character of the NHS via the provision to private companies of ‘information at population wide level … to be able to have enough business intelligence .. to understand how the system works’ (Citizen 2). Most citizens and some frontline GPs were worried that this private involvement was more likely to cause, rather than solve, problems that may be detrimental to the sustainability of the NHS (see also Montgomery ).Because I don't think there's any trust. I think you can say, giving it to these big pharmaceuticals, giving it to [private healthcare provider], increase the economy, but people say, well I don't want [private healthcare provider] to have this information, I don't want them to be any more better off and in a position to cause detriment to the NHS.…”
Section: Resultsmentioning
confidence: 99%
“…to be able to have enough business intelligence .. to understand how the system works' (Citizen 2). Most citizens and some frontline GPs were worried that this private involvement was more likely to cause, rather than solve, problems that may be detrimental to the sustainability of the NHS (see also Montgomery 2017).…”
Section: Resisting Exclusion From Public Good Managementmentioning
confidence: 99%
“…For this, STS scholars' understanding of public and their values regarding power struggles between actors, as they set boundaries and facilitate intersections (Dussauge et al 2015, Montgomery 2017 are of importance to this paper. Rather than being self-evident or universal, values are theorised here as things made in practice (Dussauge et al 2015, Leonelli 2016 which are meaningful only within the networks in which they are enacted (West and Davis 2011).…”
We draw on findings from qualitative interviews with health data researchers, GPs and citizens who opted out from NHS England's care.data programme to explore controversies and negotiations around data sharing in the NHS. Drawing on theoretical perspectives from science and technology studies, we show that the new socio‐technical, ethical and economic arrangements were resisted not only on the basis of individual autonomy and protection from exploitation, but also as a collective effort to protect NHS services and patient data. We argue that the resulting opt‐outs were a call for more personal control over data use. This was not because these citizens placed their personal interests above those of society. It was because they resisted proposed arrangements by networks of stakeholders, not seen as legitimate, to control flows and benefits of NHS patient data. Approaching informed consent this way helps us to explore resistance as a collective action for influencing the direction of such big data programmes towards the preservation of public access to healthcare as well as the distribution of ethical decision‐making between independent, trustworthy institutions and individual citizens.
“…The attempt to place data exploitations in a transactional narrative where data extractions to the state, in exchange for NHS services, bifurcated research and care. This prioritised data collections and exploitations at the expense of the local relationships that produce the data (Montgomery ). The use of the NHS was understood as an absolute entitlement of citizenship, independent of any other obligation, and there was a material and affective attachment to the NHS (de la Bellacasa ).…”
Section: Resultsmentioning
confidence: 99%
“…Care.data was, therefore, seen not as a big data scheme that will ultimately benefit people, but one that will also facilitate the demise of the public character of the NHS via the provision to private companies of ‘information at population wide level … to be able to have enough business intelligence .. to understand how the system works’ (Citizen 2). Most citizens and some frontline GPs were worried that this private involvement was more likely to cause, rather than solve, problems that may be detrimental to the sustainability of the NHS (see also Montgomery ).Because I don't think there's any trust. I think you can say, giving it to these big pharmaceuticals, giving it to [private healthcare provider], increase the economy, but people say, well I don't want [private healthcare provider] to have this information, I don't want them to be any more better off and in a position to cause detriment to the NHS.…”
Section: Resultsmentioning
confidence: 99%
“…to be able to have enough business intelligence .. to understand how the system works' (Citizen 2). Most citizens and some frontline GPs were worried that this private involvement was more likely to cause, rather than solve, problems that may be detrimental to the sustainability of the NHS (see also Montgomery 2017).…”
Section: Resisting Exclusion From Public Good Managementmentioning
confidence: 99%
“…For this, STS scholars' understanding of public and their values regarding power struggles between actors, as they set boundaries and facilitate intersections (Dussauge et al 2015, Montgomery 2017 are of importance to this paper. Rather than being self-evident or universal, values are theorised here as things made in practice (Dussauge et al 2015, Leonelli 2016 which are meaningful only within the networks in which they are enacted (West and Davis 2011).…”
We draw on findings from qualitative interviews with health data researchers, GPs and citizens who opted out from NHS England's care.data programme to explore controversies and negotiations around data sharing in the NHS. Drawing on theoretical perspectives from science and technology studies, we show that the new socio‐technical, ethical and economic arrangements were resisted not only on the basis of individual autonomy and protection from exploitation, but also as a collective effort to protect NHS services and patient data. We argue that the resulting opt‐outs were a call for more personal control over data use. This was not because these citizens placed their personal interests above those of society. It was because they resisted proposed arrangements by networks of stakeholders, not seen as legitimate, to control flows and benefits of NHS patient data. Approaching informed consent this way helps us to explore resistance as a collective action for influencing the direction of such big data programmes towards the preservation of public access to healthcare as well as the distribution of ethical decision‐making between independent, trustworthy institutions and individual citizens.
“…Both apparatuses attempted to impose their own indeterminacies and exclusions that failed to re‐produce the material‐discursive reality of falls to be measured as they were coming into conflict within those of the hospital ward. The clash of the agential cuts and routine practices of both the RCT and clinical care performed here prohibited the reading and aversion of the phenomenon of in‐hospital falls ‘ … with a potential knock‐on effect for patients and subsequently for recruitment and retention in the trial' (Montgomery : 28).…”
This paper analyses the 'failure' of a patient safety intervention. Our study was part of a randomised controlled trial (RCT) of bed and bedside chair pressure sensors linked to radio pagers to prevent bedside falls in older people admitted to hospital. We use agential realism within science and technology studies to examine the fall and its prevention as a situated phenomenon of knowledge that is made and unmade through intra-actions between environment, culture, humans and technologies. We show that neither the intervention (the pressure sensor system), nor the outcome (fall prevention) could be disentangled from the broader sociomaterial context of the ward, the patients, the nurses and (especially) their work through the RCT. We argue that the RCT design, by virtue of its unacknowledged assumptions, played a part in creating the negative findings. The study also raises wider questions about the kind of subjectivities, agencies and power relations these entanglements might effect and (re)produce in the hospital ward.We are using a performative perspective situated in science and technology studies (Barad 2007, Latour 2005, Mol 2002. The main insight of this tradition is that technologies are not neutral objects, and that they have an active existence, and meanings, within the sociomaterial
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