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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
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Constructing 'exceptionality': a neglected aspect of NHS rationing.

David Hughes1, Shane Doheny2

  • 1Department of Public Health, Policy and Social Sciences, Swansea University, Swansea, UK.

Sociology of Health & Illness
|June 21, 2019
PubMed
Summary

The principle of exceptionality in the National Health Service (NHS) determines funding for high-cost treatments. This study examines how panels in Wales constructed exceptionality, revealing challenges in evidence-based decision-making for patient care.

Keywords:
NHS managersexceptionalityhigh-cost drugsindividual funding requestsindividual patient commissioningrationing

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Area of Science:

  • Health Services Research
  • Sociology of Health and Illness
  • Health Economics

Background:

  • The National Health Service (NHS) employs the principle of exceptionality to justify funding treatments not routinely available.
  • Exceptionality assessments consider patient uniqueness, treatment efficacy, and cost, particularly for high-cost interventions like cancer drugs.
  • In Wales, local panels historically evaluated exceptionality requests until September 2017, alongside efficacy and cost.

Purpose of the Study:

  • To investigate the construction of exceptionality within panel discussions regarding funding for high-cost treatments.
  • To analyze the interplay between decision criteria, specifically efficacy and exceptionality, in panel meeting discourse.
  • To explore the sociological implications of exceptionality as a rationing mechanism in healthcare.

Main Methods:

  • Qualitative analysis of audio recordings from panel meetings.
  • In-depth interviews with stakeholders within a Welsh Health Board.
  • Discourse analysis focusing on how exceptionality was framed and negotiated.

Main Results:

  • Exceptionality emerged as a fluid and socially constructed category, challenging purely evidence-based decision-making.
  • Discussions revealed difficulties in integrating efficacy data, particularly subgroup analyses from randomized controlled trials (RCTs), into exceptionality judgments.
  • The process highlighted the complexities of defining 'exceptional' patient subgroups for accessing non-routine treatments.

Conclusions:

  • The construction of exceptionality in panel decision-making is a complex sociological process, not solely reliant on objective evidence.
  • The use of subgroup data from RCTs poses challenges in determining when a patient group is sufficiently exceptional for funding.
  • Exceptionality functions as a significant, yet under-examined, rationing mechanism within the NHS, necessitating further sociological scrutiny.