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Accepted for/Published in: Journal of Participatory Medicine

Date Submitted: Jul 31, 2025
Date Accepted: May 12, 2026

The final, peer-reviewed published version of this preprint can be found here:

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

Dowie J, Kaltoft MK, Rajput VK

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

J Particip Med 2026;18:e81623

DOI: 10.2196/81623

PMID: 42303243

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

  • Jack Dowie; 
  • Mette Kjer Kaltoft; 
  • Vije Kumar Rajput

ABSTRACT

Background:

A new approach to developing the public value set needed for Quality-Adjusted Life Year (QALY) evaluations establishes the complete value set of an individual for a generic health measure and aggregates a sample of these to achieve the public set. The novel way of establishing the complete value (utility) set for a person has the potential to transform the nature and extent of a patient’s participation in the clinical decision-making process.

Objective:

o modify the Online elicitation of Personal Utility Functions (OPUF) approach to overcome its impracticalities from a clinical point of view and embed it in a clinical decision support tool.

Methods:

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 research-normative, are not practice-normative. The Personal Utility Set for Healthcare (PUSH) approach, like the OPUF one, may be used with any multi-dimension, multi-level instrument, including condition-specific ones, but the empirical application here is with the health-related quality of life instrument EQ-5D-5L.

Results:

PUSH / EQ-5D-5L is an Excel workbook. The clinician assists non-directively in the elicitation of the patient’s value set for EQ-5D-5L, Then, drawing on the best available evidence and information, they enter into the decision support tool, the EQ-5D-5L state they judge, on the balance of probabilities, that the patient will experience at a specified future time point, for specific interventions, including no intervention. The deliberation following engagement with PUSH and personalised evaluation of the contemplated interventions will typically involve sensitivity testing and possible revision of the patient and clinician inputs. The relevant country’s public set values for each displayed health state - which could affect the availability of some options for the patient - are 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 what, if anything, is to be saved as part of their electronic medical record

Conclusions:

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 following discussion and co-produced decision. 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 (values to two decimal places). As a clinical innovation that transforms both patient participation and clinician contribution to a major extent it is advanced here for the discussion and critique that can ensure the trial protocol to be developed (including clinician tutoring) is conceptually sound.


 Citation

Please cite as:

Dowie J, Kaltoft MK, Rajput VK

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

J Particip Med 2026;18:e81623

DOI: 10.2196/81623

PMID: 42303243

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