Doing evidence-based medicine? How NHS managers ration high-cost drugs

Hughes, David; Doheny, Shane

doi:10.1016/j.socscimed.2019.05.009

Cited by 5 publications

(9 citation statements)

References 38 publications

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“…In a companion paper (Hughes and Doheny ) we argue that the form of evidence‐based‐medicine enacted in panels is shaped by wider organisational and political imperatives. Even with regard to that part of a panel discussion concerned with ‘efficacy’, the purity of ‘the science’ is eroded by the limitations of a pragmatic assembly of evidence in the limited time available, the evolving nature of NICE guidance, the difficulty of disentangling efficacy from cost‐effectiveness, and the sometimes dubious use of subgroup data from RCTs.…”

Section: Discussionmentioning

confidence: 99%

“…The consultant has claimed that the case is exceptional because of the lobectomy, the removal of the primary tumour that is unusual in stage three lung cancer cases. While assembling evidence of efficacy often depends on a pragmatic judgement of probable benefit (see: Hughes and Doheny ), greater than average benefit is even more difficult to demonstrate, and the pharmacist hedges his answers with uncertainty markers (‘I presume’, ‘you could argue’). Panel members decide that in the absence of evidence that this type of surgery improves outcomes for those receiving Tarceva, they cannot say that the patient is exceptional.…”

Section: Science or Pragmatism?mentioning

confidence: 99%

“…Here, we see the tensions that emerge when an empiricist repertoire, based on clinical effectiveness evidence, rubs against a ‘procedural’ repertoire, concerned with limiting funding to a subset of patients (for a discussion of these repertoires see: Hughes and Doheny ). Use of two separate tests of eligibility could lead panel members to vacillate between consideration of sameness and difference, and in doing so raise doubts about whether they were really engaged in evidence‐based decision making.…”

Section: Science or Pragmatism?mentioning

confidence: 99%

“…Here, panel members consider a series of factors that might indicate exceptionality, but encounter the problem that most are not measureable in a way that would allow comparison with the generality of patients for whom the drug is not funded. As explained in our companion paper (Hughes and Doheny ), panel deliberations differ from the discourse of the typical medical consultation in that a case is generally considered in relation to trials data on the relevant condition‐based risk group, rather than its unique clinical characteristics. The preoccupation with percentages and measurement reflects the increasing societal importance of statistical reasoning, often in the context of cost control or regulation (Porter ), and not least in the context of evidence‐based medicine (Greenhalgh et al .…”

Section: Searching For Exceptionalitymentioning

confidence: 99%

“…As the HTA system associated with NICE developed, commissioning bodies established panels and developed ethical frameworks and locally‐agreed procedures to guide their decision making. In a companion paper (Hughes and Doheny ) we examine how a Welsh panel seeks to enact a form of evidence‐based medicine, paying particular attention to the pragmatic determination of clinical effectiveness (or “efficacy”) under conditions where definitive evidence is often absent. The present paper focuses on the part of panel deliberations concerned with exceptionality, and thus touches on an area previously neglected by social science researchers.…”

Section: Introductionmentioning

confidence: 99%

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Constructing ‘exceptionality’: a neglected aspect of NHS rationing

Hughes

Doheny

2019

Sociology Health & Illness

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In the British NHS the principle of exceptionality involves assessing whether a patient is sufficiently different from the generality of patients to justify providing a treatment, such as an expensive cancer drug, not approved for routine funding. In England, individual requests for certain high‐cost treatments are considered by local panels that examine exceptionality alongside treatment efficacy and cost as the main criteria for funding. This was also the case in Wales until September 2017. Our paper draws on audio recordings of panel meetings and interviews in a Welsh Health Board to investigate how exceptionality was constructed in discussions. It focuses on the problematic combination of different decision criteria in meeting talk, particularly regarding the discourses associated with efficacy and exceptionality. Exceptionality is a fluid category that raised questions about the evidence‐based nature of panel decision making. In particular, the paper discusses the use of subgroup data from RCTs and the difficulty of deciding how small a subgroup of patients should be before it is deemed exceptional. Determining exceptionality has been an important mechanism for deciding that a minority of NHS patients can still receive high‐cost treatments not routinely provided for all. As a neglected rationing mechanism it warrants sociological examination.

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Section: Discussionmentioning

confidence: 99%

Section: Science or Pragmatism?mentioning

confidence: 99%

Section: Science or Pragmatism?mentioning

confidence: 99%

Section: Searching For Exceptionalitymentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Constructing ‘exceptionality’: a neglected aspect of NHS rationing

Hughes

Doheny

2019

Sociology Health & Illness

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The trouble with IVF and randomised control trials: Professional legitimation narratives on time-lapse imaging and evidence-informed care

Perrotta

Geampana

2020

Social Science & Medicine

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Focusing on the case of time-lapse imaging (TLI), this paper analyses how medical professionals negotiate the use of new ‘add-on’ fertility treatments in light of the limited evidence available. The data produced by TLI technologies is meant to help professionals identify the best embryo to be implanted. Embryo selection is essential in IVF practice for increasing pregnancy rates and reducing the negative effects of repeated failures. More than 5 years after the introduction of TLI in IVF labs, however, there has been no conclusive randomised control trial (RCT) evidence to show that the tools do indeed have a significant impact on pregnancy rates. Nonetheless, many public clinics in the UK have adopted such technologies. Consequently, our research asks: How is the use of TLI tools legitimised by professionals, in light of contradictory evidence? Focusing on 25 semi-structured staff interviews, we argue that professionals use several strategies to legitimise the use of TLI in the clinic without, however, challenging the tenets of evidence-based medicine (EBM) and the value it places on RCTs. Rather, professionals emphasise various advantages that TLI offers, including its use as a lab tool, its potential for knowledge production in embryology, and the role it plays in the management of patient expectations and course of treatment. This paper contributes to debates on the role of EBM in modern medicine and fertility care specifically – an area where this inter-relationship has been underexplored. We conclude by suggesting avenues towards a more nuanced understanding of EBM as it relates to IVF treatment and a rapidly changing biotechnology context.

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Good conduct in a context of rationing: A case study of how frontline professionals deal with distributive dilemmas of novel gene therapies

Wadmann

Hauge

Navne

2023

Sociology Health & Illness

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Classical dilemmas of how to distribute limited resources have been rekindled by the rise of advanced, high-cost therapies. Building on a case study of a novel gene therapy in neuropaediatric care, this article explores the dilemmas that explicit priority setting can create for frontline professionals and develops a typology of professionals' responses to these dilemmas. Despite political attempts to centralise priority setting and spare health professionals from having to consider treatment costs at the 'bedside', this study shows that concern for economic efficiency and budget control nonetheless need to be handled and balanced against other accountabilities in the daily work of frontline professionals. Contributing to the sociological debate on priority setting and rationing, this study develops an analytical perspective attuned to the relational aspects of frontline work and the challenges related to the balancing of diverging ideas of good conduct. Further, focussing on an empirical field at the forefront of genomic medicine, this study brings the sociological debate on

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Doing evidence-based medicine? How NHS managers ration high-cost drugs

Cited by 5 publications

References 38 publications

Constructing ‘exceptionality’: a neglected aspect of NHS rationing

Constructing ‘exceptionality’: a neglected aspect of NHS rationing

The trouble with IVF and randomised control trials: Professional legitimation narratives on time-lapse imaging and evidence-informed care

Good conduct in a context of rationing: A case study of how frontline professionals deal with distributive dilemmas of novel gene therapies

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