To use structured deliberation to elicit and describe the values of the public in Alberta, Canada, on the question of whether the severity of a rare condition can justify it being given priority in funding over common conditions affecting larger numbers of patients, and what aspects of a condition drive this judgment.
Thematic analysis of transcripts of a group deliberative exercise carried out as part of two citizens’ juries. The exercise was designed to elicit participants’ conception of disease severity, and trade-offs between helping small groups with severe conditions and larger groups with less severe conditions.
In trading off severity and numbers, all groups were willing to choose a more severely ill but smaller group of patients over a less severely ill but larger group of patients, although how much of a severity differential was required varied between groups. Pain that could not be relieved by alternative means was the strongest motivator for choosing the smaller group. Other symptoms with no alternative means of relief were strong motivators as well.
These findings indicate that, all else being equal, the public would support giving priority to a smaller but more severely ill group of patients over a larger group when prioritizing the needs of the few is life-saving, extends life enough to give hope of future improvement, and relieves otherwise intractable symptoms, especially pain.