Title: Evaluating the economic benefits of complex interventions: accounting for non-health effects
Funder: Department of Health and Social Care

Abstract: Background: The current evaluative framework used to inform the allocation of finite NHS resources focuses on the maximisation of health status. The National Institute for Health and Care Excellence (NICE) endorses the use of the Quality Adjusted Life Year (QALY) as the effectiveness metric for use in model-based economic evaluations. There are complex interventions which may produce benefits which are distinct from gains in health status (health). Interventions used in the context of clinic genetics services for inherited eye conditions include genetic testing and /or genetic counselling and are an example of a complex intervention. Genetic ophthalmology services provide care for people with inherited eye conditions that are currently incurable, but which provide information from genetic tests/counselling that is valued by people. It is currently difficult to determine the relative cost-effectiveness of such complex interventions which produce non-health benefits. This PhD aims to further develop methods of economic evaluation to enhance existing decision mechanisms used to allocate scarce resources in the NHS. Objectives: Identify the health and non-health benefits attributable to genetic diagnostic testing and counselling;Explore if health and non-health benefits are complements or substitutes in the context of genetic testing and counselling;Quantify the relative stated preference weights for health and non-health benefits;Combine evidence to understand the impact of using these preference weights for the relative value of health and non-health benefits in the context of the NICE evaluative framework;Explore decision-makers views about including the value of health and non-health benefits in an economic evaluation and the capacity for these values to be integrated into the current cost-effectiveness analysis evaluative framework. Design:This is a mixed-methods PhD comprising three interlinked study phases:Study phase 1: Meta-synthesis of existing qualitative evidence and interviews with stakeholdersStudy phase 2: Elicitation of preference weights using a best-worst scaling discrete choice experiment (BWDCE)Study phase 3. Using decision-analytic models to quantify the impact of using the preference weights for health and non-health benefits in the adapted cost-effectiveness evaluative framework and elicit the views of decision makers on findings Qualitative findings (from phase 1) will inform the design of a bespoke BWDCE. The BWDCE will be used to develop a set of preference weights which incorporate societal preferences for the health and non-health benefits of complex interventions; using genomic testing for inherited eye conditions as a case study. Decision-analytic models will be constructed to understand the impact of using each health and non-health preference weight on the relative cost-effectiveness of genetic testing for inherited eye conditions compared with current practice (no genetic test). A focus group involving decision makers with experience of NICE appraisal processes will be used to explore the implications, advantages and disadvantages of adapting the cost effectiveness evaluative framework in the NHS.

Lay abstract: The limited resources available to the National Health Service (NHS) should ideally be allocated so that they provide the best value-for-money. Value is currently defined in terms of how much an intervention improves health. There are, however, some interventions which can be valued for reasons other than their ability to improve health alone. Technological advances in medical genetics mean that diagnostic tests can provide useful information to individuals and their families for an increasing number of conditions. New methods of looking for faults in individuals' DNA have resulted in the creation of a new medical discipline; genomics'. Whereas traditional genetic tests look for single known faults in specific sections of a person's genetic make-up, new genomic testing methods can look for multiple faults across every section of an individual's DNA simultaneously. Clinical genetics services involving genetic testing and genetic counselling are becoming relevant for more conditions because the new tests can be used for conditions which traditional tests could not. Genetic testing and genetic counselling are considered to be complex interventions because they have the potential to impact upon many aspects of individuals' health and well-being. For example, people can be provided with the results of a genetic test which can confirm which particular type of incurable inherited eye condition they have. Knowing the type of genetic eye condition will let people know the extent of visual impairment to expect and potentially how quickly the vision loss is likely to occur. Genetic counselling can provide people with information and support so that they can make informed decisions based on test results; people might decide to retrain for career changes, for example, or seek access to services that will help them to adapt and cope with visual impairment. There are other examples of interventions provided in the NHS for genetic and other non-genetic conditions which can be valued by individuals for reasons un-related to improvements in health. This poses a problem for decision-makers in the NHS who want to make sure the best possible range of services is available for the entire population. The process for NHS decision-making is based on the principle that the health of the population should be maximised. It is possible to compare different interventions in terms of the cost needed to improve health and so approve the most cost-effective technologies for use in the NHS. It is difficult, though, to determine the relative value-for-money of complex interventions which produce non-health benefits (such as capability to aid informed decision making) because those outcomes are not always adequately measured using the current methods. This PhD will use evidence collected from patients and the general public to quantify the relative importance of health and non-health benefits when valuing a complex intervention. A patient advisory group will be set-up to advise on the design of each aspect of the work and the on-going delivery of the project. Example conditions seen in genetic ophthalmology are useful in this context because there are interventions used which have the potential to improve health and non-health outcomes to varying degrees. There are three key parts to this project. Firstly, existing research findings about which aspects of clinical genetics services are important will be examined. Based on these findings a survey will be designed which will used to measure the extent to which individuals would be willing to trade-off' between different types of health and non-health benefits which derive from complex interventions. The final part of the study will use results of the survey in an economic model to see how the existing NHS decision-making rules could be adapted to allow for these complex interventions to be compared in terms of the value-for-money they provide from the viewpoint of the NHS. An important aspect of this final section of the study is that NHS decision-makers will be involved in looking at the results from the economic models to provide their views on how the current rules might be refined.

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS;8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE