Research campaigns in the UK National Health Service: patient recruitment and questions of valuation

Abstract

The National Institute for Health Research (NIHR) aims to improve national ‘health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of ‘clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of ‘assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system.

E-Infrastructures and the divergent assetization of public health data: Expectations, uncertainties, and asymmetries

“…Expectations of EHR data-driven research for speculative valuations of health and wealth have, therefore, their own important role in how GPs, NHS patients and the data they co-produce are reimagined and valued for EHR data-driven research within a high-stakes biomedical knowledge economy (Birch et al, 2020; Dussauge et al, 2015; Wienroth et al, 2019). They are fundamental in mobilizing various state, commercial and academic actors as well as capital for the assetization of NHS patient data and the enactment of a new health data access market (Birch et al, 2020; Brown, 2003; Vezyridis and Timmons, 2017).…”

“…aggregate databases, risk calculators) and intangible (e.g. epidemiological and computational expertise) knowledge assets for financialized EHR data-driven research and development (Birch et al, 2020; Dagiral and Peerbaye, 2016; Muniesa et al, 2017; Wienroth et al, 2019).…”

“…Dagiral and Peerbaye, 2016;Birch, 2017a;Muniesa et al, 2017;Birch, 2019). Their uninterrupted participation into the valuation practices of these research services facilitate their ceaseless assetisation (Wienroth et al, 2019) for the continuous capitalisation of NHS patient data and the financialisation of EHR data-driven research (cf. Muniesa et al, 2017;Birch, 2017a).…”

Delivering healthcare’s ‘triple aim’: electronic health records and the health research participant in the UK National Health Service

“…Wienroth et al . (2019) argues that National Institute for Health Research recruitment campaigns frame patients themselves as assets within the political economy of the NHS. In other contexts, such as the biobank, this value is argued to be something that is produced and maintained (as opposed to something innate) through the ongoing, often invisible labour of both biobank participants and biobank staff (Harris et al, 2013, Wyatt et al, 2018a).…”

Alzheimer’s disease and the development of a post-genomic science

“…However, as the case of MCI illustrates, this boundary is increasingly fuzzy in contemporary biomedical practice. This is particularly the case in contexts such as Alzheimer's disease in which the range of therapies "in the clinic" is limited and in which clinical trials are seen as part of the therapeutic landscape, or genomic medicine, in which clinical investigations may be closely linked to research participation (Davis 2017;Dheensa et al 2018;Wienroth, Pearce, and McKevitt, 2019). For Boenink (2018), the diagnostic criteria, and accompanying moves to establish "appropriate use criteria" for biomarker technologies in the clinic, play a dual role.…”