Enhancing Patient Participation in Co-Productive Decision-Making With Personal Value Sets: Clinical Trial Prototype

A new approach has been developed to establish the public value (utility) set for the generic health measure used in quality-adjusted life year estimates. In contrast to conventional approaches, it establishes the complete utility set for an individual and aggregates a sample of these to achieve the public set. The novel way of establishing the complete utility set for an individual has the potential to transform the nature and extent of a patient's participation in the clinical decision-making process. We have modified the online elicitation of personal utility functions approach to overcome its impracticalities in a clinical consultation. The main modification is the replacement of choice-based items by scale-based ones, on the grounds that the former's time and cognitive demands, while tolerable in the research context, make it infeasible in practice. The personal utility set for healthcare (PUSH) approach, like the online elicitation of personal utility functions one, may be used with any multidimension, multilevel instrument, including condition-specific ones, but the empirical application here is with the health-related quality of life instrument EQ-5D-5L. PUSH for EQ-5D-5L is a decision support tool in the form of a spreadsheet workbook. The clinician assists nondirectively in the elicitation of the patient's utility set for EQ-5D-5L. Subsequently, the clinician, drawing on the best available evidence and information, enters the EQ-5D-5L states they judge, on the balance of probabilities, the patient will be in (at an agreed future time point), for specific interventions, plus no intervention. The relevant country's public set utility for each displayed health state is simultaneously revealed. (Those for 13 countries are in the current template.) It is envisaged that the clinician holds the PUSH template on their computer and opens a new copy for use with each patient. They agree with the patient on what, if anything, is to be saved as part of their electronic medical record. The deliberation following engagement with PUSH and personalized evaluation of the contemplated interventions will typically involve sensitivity testing and possible revision of the patient and clinician inputs. One key responsibility of the clinician is to dispel any "aura of exactness" or pseudo-precision that may be created by the use of precise percentages (or values to 2 decimal places). PUSH participation is to be seen as a component of deliberative co-productive decision-making to which both parties contribute significantly but in role-appropriate ways. The outputs are intended to provide a useful, analysis-framed input into the subsequent discussion and co-produced decision. As a major clinical innovation that transforms both patient participation and clinician contribution, it is advanced here for the discussion and critique that will enable a conceptually sound trial protocol to be developed (including clinician tutoring).