The Online Elicitation of Personal Utility Functions (OPUF) tool: a new method for valuing health states

Introduction Standard valuation methods, such as TTO and DCE are inefficient. They require data from hundreds if not thousands of participants to generate value sets. Here, we present the Online elicitation of Personal Utility Functions (OPUF) tool; a new type of online survey for valuing EQ-5D-5L health states using more efficient, compositional elicitation methods, which even allow estimating value sets on the individual level. The aims of this study are to report on the development of the tool, and to test the feasibility of using it to obtain individual-level value sets for the EQ-5D-5L. Methods We applied an iterative design approach to adapt the PUF method, previously developed by Devlin et al., for use as a standalone online tool. Five rounds of qualitative interviews, and one quantitative pre-pilot were conducted to get feedback on the different tasks. After each round, the tool was refined and re-evaluated. The final version was piloted in a sample of 50 participants from the UK. A demo of the EQ-5D-5L OPUF survey is available at: https://eq5d5l.me Results On average, it took participants about seven minutes to complete the OPUF Tool. Based on the responses, we were able to construct a personal EQ-5D-5L value set for each of the 50 participants. These value sets predicted a participants' choices in a discrete choice experiment with an accuracy of 80%. Overall, the results revealed that health state preferences vary considerably on the individual-level. Nevertheless, we were able to estimate a group-level value set for all 50 participants with reasonable precision. Discussion We successfully piloted the OPUF Tool and showed that it can be used to derive a group-level as well as personal value sets for the EQ-5D-5L. Although the development of the online tool is still in an early stage, there are multiple potential avenues for further research.

The Visualized Employment Contract. An exploratory study on contract visualization in Danish employment contracts

The essence of any employment contract should be a clear and understandable communication of the employment relationship. Using comics as a medium for employment contracts can help in achieving this goal. This article provides an exploratory case study in the context of Danish labour law. In a first step, it is assessed whether an employment contract made of comic strips would meet the formal requirements of Danish and European labour law. In a second step, the textual and comic versions of the employment contract of a Danish leisure organization are tested on two volunteer groups. The results show that both the personal utility and actionable knowledge of the users of comic contracts increased significantly compared to the users of the textual version of the contract. This provides initial evidence that contract visualization with the help of comic strips can be an important component in the reform and re-imagination of labour markets and labour law that are undergoing a fundamental transformation.

Utility of Genetic Testing from the Perspective of Parents/Caregivers: A Scoping Review

In genomics, perceived and personal utility have been proposed as constructs of value that include the subjective meanings and uses of genetic testing. Precisely what constitutes these constructs of utility and how they vary by stakeholder perspective remains unresolved. To advance methods for measuring the value of genetic testing in child health, we conducted a scoping review of the literature to characterize utility from the perspective of parents/caregivers. Peer reviewed literature that included empiric findings from parents/caregivers who received genetic test results for an index child and was written in English from 2016–2020 was included. Identified concepts of utility were coded according to Kohler’s construct of personal utility. Of 2142 abstracts screened, 33 met inclusion criteria. Studies reflected a range of genetic test types; the majority of testing was pursued for children with developmental or neurodevelopmental concerns. Coding resulted in 15 elements of utility that mapped to Kohler’s four domains of personal utility (affective, cognitive, behavioural and social) and one additional medical management domain. An adapted construct of utility for parents/caregivers may enable specific and standardized strategies for researchers to use to generate evidence of the post-test value of genetic testing. In turn, this will contribute to emerging methods for health technology assessment and policy decision making for genomics in child health.

Whether, when, how, and how much? General public’s and cancer patients’ views about the disclosure of genomic secondary findings

Background:Data on the modalities of disclosing genomic secondary findings (SFs) remain scarce. We explore cancer patients’ and the general public’s perspectives about disclosing genomic SFs and the modalities of such disclosure. Methods:Sixty-one cancer patients (n=29) and members of the public (n=32) participated in eight focus groups in Montreal and Quebec City, Canada. They were asked to provide their perspectives of five fictitious vignettes related to medically actionable and non-actionable SFs. A thematic analysis of the transcripts was conducted. Results:Cancer patients and members of the public were open to receive genomic SFs, considering their potential clinical and personal utility. They believed that the right to know or not and share or not such findings should remain the patient’s decision. They thought that the disclosure of SFs should be made mainly in person by the prescribing clinician. Maintaining confidentiality when so requested and preventing genetic discrimination were considered essential. Conclusion:Participants in this study welcomed the prospect of disclosing genomic SFs, as long as the right to choose to know or not to know is preserved. Policies and practice guidelines aiming to protect genetic information confidentiality, and patients’ and families’ autonomy, physical and psychosocial wellbeing are expected.

Rational Curiosity and Information-Seeking in the COVID-19 Pandemic

Curiosity is a powerful determinant of behavior. The past decade has seen a surge of scientific research on curiosity, an endeavor recently imbibed with urgency by the WHO, which set managing information-seeking as a public health goal during pandemics. And yet, a fundamental aspect of curiosity has remained unresolved: its relationship to utility. Is curiosity a drive towards information simply for the sake of obtaining that information, or is it a rational drive towards optimal learning? We leveraged people’s curiosity about COVID-19 to study information-seeking and learning in a large sample (n=5376) during the spring of 2020. Our findings reveal that curiosity is goal-rational in that it maximizes the personal utility of learning. Personal utility, unlike normative economic utility, is contingent on a person’s motivational state. On the basis of these findings, we explain information-seeking during the pandemic with a rational theoretical framework for curiosity.