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

David Hughes, Shane Doheny

Social Science & Medicine, Volume: 235, Start page: 112304

Swansea University Author: David Hughes

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DOI (Published version): 10.1016/j.socscimed.2019.05.009

Abstract

This paper describes how British NHS managers enact a form of evidence-based medicine (EBM) as they consider whether to fund high-cost drugs for individual patients. It is based on observations and audio recordings of meetings of a Welsh Individual Patient Commissioning Panel. Panel deliberations re...

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Published in: Social Science & Medicine
ISSN: 0277-9536
Published: Elsevier BV 2019
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URI: https://cronfa.swan.ac.uk/Record/cronfa50302
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last_indexed 2020-10-20T03:00:42Z
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spelling 2020-10-19T13:01:52.1826787 v2 50302 2019-05-10 Doing evidence-based medicine? How NHS managers ration high-cost drugs f1fbd458e3c75d8b597c0ac8036f2b88 David Hughes David Hughes true false 2019-05-10 This paper describes how British NHS managers enact a form of evidence-based medicine (EBM) as they consider whether to fund high-cost drugs for individual patients. It is based on observations and audio recordings of meetings of a Welsh Individual Patient Commissioning Panel. Panel deliberations represent a hybrid discourse that links decisions to scientific evidence, but also takes account of organisational and lifeworld pressures. Discussions typically begin with a verbal review of the latest evidence concerning drug “efficacy” for the type of patient referred, but this empiricist repertoire quickly shifts to a procedural repertoire that effectively limits access to funding to patients with exceptional characteristics. “Exceptionality” is determined, not by considerations of social worth or deservingness, but by whether the patient falls within a subgroup shown by randomised controlled trials to gain more than average benefit. A mechanism that limits the numbers qualifying for expensive interventions thus continues to be connected to evidence. Nevertheless a third contingent repertoire concerned with such matters as political interventions, legal challenges to decisions, and the moral misgivings of panel members, may also enter discussions. Panel members’ attempts to “do” EBM usually combine these three discursive repertoires without great difficulty, but the paper describes instances when tensions between them surface. Cases where drugs appear likely to bring benefit but exceptionality is absent, and those where expensive interventions will bring only a few months of extra life, were among the areas that caused panel members to reflect upon the rationality of their decision-making procedures. Controversy about individual funding requests has intensified in recent years with critics questioning the evidential basis of some decisions, and major policy reviews being undertaken in both England and Wales. Journal Article Social Science & Medicine 235 112304 Elsevier BV 0277-9536 Evidence-based medicine; individual patient funding requests; rationing; clinical effectiveness; NHS 1 8 2019 2019-08-01 10.1016/j.socscimed.2019.05.009 http://dx.doi.org/10.1016/j.socscimed.2019.05.009 COLLEGE NANME COLLEGE CODE Swansea University NIHR 2020-10-19T13:01:52.1826787 2019-05-10T04:51:54.4729210 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health David Hughes 1 Shane Doheny 2 0050302-17052019135752.pdf 50302.pdf 2019-05-17T13:57:52.4100000 Output 271896 application/pdf Accepted Manuscript true 2020-05-10T00:00:00.0000000 Released under the terms of a Creative Commons Attribution Non-Commercial No Derivatives License (CC-BY-NC-ND). true eng
title Doing evidence-based medicine? How NHS managers ration high-cost drugs
spellingShingle Doing evidence-based medicine? How NHS managers ration high-cost drugs
David Hughes
title_short Doing evidence-based medicine? How NHS managers ration high-cost drugs
title_full Doing evidence-based medicine? How NHS managers ration high-cost drugs
title_fullStr Doing evidence-based medicine? How NHS managers ration high-cost drugs
title_full_unstemmed Doing evidence-based medicine? How NHS managers ration high-cost drugs
title_sort Doing evidence-based medicine? How NHS managers ration high-cost drugs
author_id_str_mv f1fbd458e3c75d8b597c0ac8036f2b88
author_id_fullname_str_mv f1fbd458e3c75d8b597c0ac8036f2b88_***_David Hughes
author David Hughes
author2 David Hughes
Shane Doheny
format Journal article
container_title Social Science & Medicine
container_volume 235
container_start_page 112304
publishDate 2019
institution Swansea University
issn 0277-9536
doi_str_mv 10.1016/j.socscimed.2019.05.009
publisher Elsevier BV
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
url http://dx.doi.org/10.1016/j.socscimed.2019.05.009
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description This paper describes how British NHS managers enact a form of evidence-based medicine (EBM) as they consider whether to fund high-cost drugs for individual patients. It is based on observations and audio recordings of meetings of a Welsh Individual Patient Commissioning Panel. Panel deliberations represent a hybrid discourse that links decisions to scientific evidence, but also takes account of organisational and lifeworld pressures. Discussions typically begin with a verbal review of the latest evidence concerning drug “efficacy” for the type of patient referred, but this empiricist repertoire quickly shifts to a procedural repertoire that effectively limits access to funding to patients with exceptional characteristics. “Exceptionality” is determined, not by considerations of social worth or deservingness, but by whether the patient falls within a subgroup shown by randomised controlled trials to gain more than average benefit. A mechanism that limits the numbers qualifying for expensive interventions thus continues to be connected to evidence. Nevertheless a third contingent repertoire concerned with such matters as political interventions, legal challenges to decisions, and the moral misgivings of panel members, may also enter discussions. Panel members’ attempts to “do” EBM usually combine these three discursive repertoires without great difficulty, but the paper describes instances when tensions between them surface. Cases where drugs appear likely to bring benefit but exceptionality is absent, and those where expensive interventions will bring only a few months of extra life, were among the areas that caused panel members to reflect upon the rationality of their decision-making procedures. Controversy about individual funding requests has intensified in recent years with critics questioning the evidential basis of some decisions, and major policy reviews being undertaken in both England and Wales.
published_date 2019-08-01T13:45:35Z
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