"It's hard to say anything definitive about what severity really is": lay conceptualisations of severity in a healthcare context.

BACKGROUND: Demand for healthcare outweighs available resources, making priority setting a critical issue. 'Severity' is a priority-setting criterion in many healthcare systems, including in Norway, Sweden, the Netherlands, and the United Kingdom. However, there is a lack of consensus on what severity means in a healthcare context, both in the academic literature and in policy. Further, while public preference elicitation studies demonstrate support for severity as a relevant concern in priority setting, there is a paucity of research on what severity is taken to mean for the public. The purpose of this study is to explore how severity is conceptualised by members of the general public. METHODS: Semi-structured group interviews were conducted from February to July 2021 with members of the Norwegian adult public (n = 59). These were transcribed verbatim and subjected to thematic analysis, incorporating inductive and deductive elements. RESULTS: Through the analysis we arrived at three interrelated main themes. Severity as subjective experience included perceptions of severity as inherently subjective and personal. Emphasis was on the individual's unique insight into their illness, and there was a concern that the assessment of severity should be fair for the individual. The second theme, Severity as objective fact, included perceptions of severity as something determined by objective criteria, so that a severe condition is equally severe for any person. Here, there was a concern for determining severity fairly within and across patient groups. The third theme, Severity as situation dependent, included perceptions of severity centered on second-order effects of illness. These included effects on the individual, such as their ability to work and enjoy their hobbies, effects on those surrounding the patient, such as next of kin, and effects at a societal level, such as production loss. We also identified a concern for determining severity fairly at a societal level. CONCLUSIONS: Our findings suggest that severity is a polyvalent notion with different meanings attached to it. There seems to be a dissonance between lay conceptualisations of severity and policy operationalisations of the term, which may lead to miscommunications between members of the public and policymakers.

Charting public views on the meaning of illness severity.

BACKGROUND: Illness severity is a central principle in multiple priority-setting frameworks, yet there is a paucity of research on public views regarding the meaning of illness severity. This study builds on the findings of a Q methodology study with members of the public that identified four general viewpoints on the meaning of illness severity. Here, we investigate the support for those viewpoints among the Norwegian population. METHODS: Following piloting, the online survey was distributed to a broadly representative sample of the population (March to April 2023). The viewpoints from the earlier Q study were converted into vignettes: Lifespan, Subjective, Objective, and Functioning and Quality of Life (FQoL). The main task in the survey comprised ranking the vignettes and scoring them on a 0-10 visual analogue scale. We describe vignette alignment (from weak to strong) based on four categorisations (C1 to C4). C1 placed all respondents on their top scored vignette(s); C2 required a score of ≥7; C3 was designed to resolve ties; and C4 (which describes vignette membership) required a score of ≥7, a gap of two between vignettes scored ≥7, and did not allow ties. RESULTS: The survey was completed by 1174 individuals; those who completed in ≤3.5 min were excluded. Of the final sample (n = 1094), 98.1% scored at least one vignette ≥7. In C1, 40.2% were aligned with Lifespan, 32.4% with FQoL, 28.9% with Objective, and 16.3% with Subjective. Using the C4 criteria, 55.4% did not have vignette membership, 13.6% had membership with Lifespan, 13.1% with Objective, 11.4% with FQoL, and 6.5% with Subjective. CONCLUSIONS: Severity is an ambiguous term among members of the public. Decisionmakers ought to bear this plurality of meanings in mind, and perhaps reconsider whether using a term as multifaceted as 'severity' is helpful in formulating precise and transparent priority-setting criteria.

Preparing popular views for inclusion in a reflective equilibrium: A case study on illness severity.

Principles for priority setting in health care are typically forged by experts influenced by the normative literature on priority setting. Meanwhile, their implementation is subject to democratic deliberation, political pressures, and administrative bureaucracy. Sometimes expert proposals are democratically rejected. This points towards a problem: on the one hand, the fact that a majority shares a moral belief does not inherently validate this belief. On the other hand, when justifying a position to others, we cannot expect much success without engaging with their moral judgments. In this work we examine the possibility of including so-called popular views in a reflective equilibrium process. In reflective equilibrium processes, we are usually interested in considered judgments rather than mere intuitions. Popular views, arguably, often do not meet this standard. To mitigate this, we propose to bolster popular views by linking them with theoretical frameworks echoing similar moral perspectives. We use illness severity as a case study and show that a set of popular accounts can provide considered judgments that merit inclusion in a publicly informed reflective equilibrium process. This is plausibly a way forward in the search for priority setting principles that are both normatively sound and acceptable to the public. Our method provides a general framework for refining available data on popular views on moral questions, including when we cannot assess the consideredness of such views.

A severely fragmented concept: Uncovering citizens' subjective accounts of severity of illness.

Universal healthcare is constrained by national governments' finite health resources. This gives rise to complex priority-setting dilemmas. In several universal healthcare systems, the notion of severity (Norwegian: 'alvorlighet') is a key consideration in priority setting, such that treatments for 'severe' illness may be prioritised even when evidence suggests it would not be as cost-effective as treatment options for other conditions. However, severity is a poorly-defined concept, and there is no consensus on what severity means in the context of healthcare provision - whether viewed from public, academic, or professional perspectives. Though several public preference-elicitation studies demonstrate that severity is considered relevant in healthcare resource distribution, there is a paucity of research on public perceptions on the actual meaning of severity. We conducted a Q-methodology study between February 2021 and March 2022 to investigate views on severity amongst general public participants in Norway. Group interviews (n = 59) were conducted to gather statements for the Q-sort ranking exercises (n = 34). Data were analysed using by-person factor analysis to identify patterns in the statement rankings. We present a rich picture of perspectives on the term 'severity', and identify four different, partly conflicting, views on severity in the Norwegian population, with few areas of consensus. We argue that policymakers ought to be made aware of these differing perspectives on severity, and that there is need for further research on the prevalence of these views and on how they are distributed within populations.

Reframing cancer: challenging the discourse on cancer and cancer drugs-a Norwegian perspective : Reframing Cancer.

BACKGROUND: As the range of therapeutic options in the field of oncology increases, so too does the strain on health care budgets. The imbalance between what is medically possible and financially feasible is frequently rendered as an issue of tragic choices, giving rise to public controversies around health care rationing. MAIN BODY: We analyse the Norwegian media discourse on expensive cancer drugs and identify four underlying premises: (1) Cancer drugs are de facto expensive, and one does not and should not question why. (2) Cancer drugs have an indubitable efficacy. (3) Any lifetime gained for a cancer patient is an absolute good, and (4) cancer patients and doctors own the truth about cancer. Applying a principle-based approach, we argue that these premises should be challenged on moral grounds. Within the Norwegian public discourse, however, the premises largely remain unchallenged due to what we find to be unjustified claims of moral superiority. We therefore explore alternative framings of the issue of expensive cancer drugs and discuss their potential to escape the predicament of tragic choices. CONCLUSIONS: In a media discourse that has seemingly stagnated, awareness of the framings within it is necessary in order to challenge the current tragic choices predicament the discourse finds itself in. In order to allow for a discourse not solely concerned with the issue of tragic choices, the premises that underlie it must be subjected to critical examination. As the field of oncology advances rapidly, we depend on a discussion of its opportunities and challenges that is meaningful, and that soberly addresses the future of cancer care-both its potential and its limits.