Involving Members of the Public in Health Economics Research: Insights from Selecting Health States for Valuation to Estimate Quality-Adjusted Life-Year (QALY) Weights
Over recent years, public involvement in health research has expanded considerably. However, public involvement in designing and conducting health economics research is seldom reported. Here we describe the development, delivery and assessment of an approach for involving people in a clearly defined piece of health economics research: selecting health states for valuation in estimating quality-adjusted life-years (QALYs). This involvement formed part of a study to develop a condition-specific preference-based measure of health-related quality of life, the Multiple Sclerosis Impact Scale (MSIS-8D), and the work reported here relates to the identification of plausible, or realistic, health states for valuation. An Expert Panel of three people with multiple sclerosis (MS) was recruited from a local involvement network, and two health economists designed an interactive task that enabled the Panel to identify health states that were implausible, or unlikely to be experienced. Following some initial confusion over terminology, which was resolved by discussion with the Panel, the task worked well and can be adapted to select health states for valuation in the development of any preference-based measure. As part of the involvement process, five themes were identified by the Panel members and the researchers which summarised our experiences of public involvement in this health economics research example: proportionality, task design, prior involvement, protectiveness and partnerships. These are described in the paper, along with their practical implications for involving members of the public in health economics research. Our experience demonstrates how members of the public and health economists can work together to improve the validity of health economics research.
Plain Language Summary It has become commonplace to involve members of the public in health service research. However, published reports of involving people in designing health economics research are rare. We describe how we designed a way of involving people in a particular piece of health economics research.
The aim of the work was to produce descriptions of different states of health experienced by people with multiple sclerosis (MS). These descriptions have since been rated in terms of how good or bad they are in a way that can be used by the National Institute for Health and Care Excellence (NICE) to make decisions about what services to fund on the NHS.
We formed a panel of three people with MS, and designed a task to help the group produce health descriptions likely to be experienced by people with MS. After discussion about jargon, and working together to find more layman’s terms, the task worked well, and can be adapted to produce health descriptions for any condition.
We identified some key themes about working together that give insights into how members of the public can be involved in health economics research, and show the importance of their involvement in improving the relevance of this research.
We would like to thank the Expert Panel of people with multiple sclerosis for their help and support with this research.
EG co-conceived the initial idea for this work, actively contributed to each stage of the work, and co-wrote and revised the manuscript. KB actively contributed to each stage of the work, and co-wrote and revised the manuscript. LT actively contributed to each stage of the work, and co-wrote and revised the manuscript. AH co-conceived the initial idea for this work, actively contributed to each stage of the work, and co-wrote and revised the manuscript.
Compliance with Ethical Standards
Ethical approval was granted by the University of Exeter Medical School Research Ethics Committee.
This research was funded by the MS Society and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Conflict of interest
Elizabeth Goodwin, Kate Boddy, Lynn Tatnell and Annie Hawton have no conflicts of interest.
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