Health Economics and Vision Disability Moving towards person-centred outcome measurement and resource allocation

Vision disability is an important health issue in Australia. Through a population-based, epidemiologic modelling study (Chapter 2), it is predicted that the number of people with vision disability in Australia will increase from 283,650 (1.10%) in 2020 to 559,161 (1.38%) in 2060, with an average annual growth rate of 0.58%. Orientation and mobility (O&M) programs help vision impaired individuals learn how to travel safely and independently by using their remaining vision and/or other senses such as hearing and touch to compensate for reduced visual information. With an increasing number of people with vision disability, demand for O&M services in Australia are estimated to increase from 123,317 (0.48%) in 2020 to 237,694 (0.59%) in 2060, with an average annual growth rate of 0.53 %. (Chapter 2). Health economics is a branch of economics that applies explicit methods to produce evidence that informs decision making on health resource allocation. Due to increasing demands, scarce resources and the existence of ‘market-failure’ in the Australian vision disability sector, economic evaluation will become an unavoidable exercise to assess the relative value for money of vision disability interventions. Efficiency – using limited resources to achieve maximum benefits – often serves as one of the determining factors on whether or not to introduce, continue, adjust or discontinue a service or support. However, there are numerous debates over what constitutes benefits, how these benefits should be measured, valued and aggregated and what implications they have on people living with vision disability. O&M programs are used as an example of a vision-related disability intervention throughout this thesis to investigate the potential issues associated with benefit/outcome measurement in the conventional appraisal techniques such as cost-effectiveness analysis (CEA), cost-utility analysis (CUA) and cost-benefit analysis (CBA). A systematic review of O&M outcome measures was carried out to clarify what the intended benefits/outcomes of the O&M programs are and how such benefits/outcomes should be measured and valued. (Chapter 3) The findings of this review confirm the complicated, dynamic and person-centred nature of O&M, which pose specific concerns for CEA. Since CEA relies on unidimensional outcome measure in a natural unit (such as life years gained, number of cases detected etc), it would fail to accurately and adequately capture the diversified benefits of O&M programs. CUA is a specialised form of CEA, in which quality and length of life are incorporated into economic evaluation. The most common form of outcome measurement in CUA is quality-adjusted life year (QALY) - a measure of life expectancy that weighs each year of life based on the quality of that life, from one (perfect health) to zero (death). In the disability sector, though, CUA and QALY face substantial ethical and technical hurdles. Firstly, CUA takes little notice of social objectives and distributional concerns as QALY disregards the different characteristics of people (such as age, gender, income, ethnicity, rural location/remoteness or comorbidities) and applies equal weight to each individual. Second, the ranking of quality of life is done by the general public with a majority having no clear idea about what it means to live with a disability. And similar to CEA, CUA narrowly focuses on health, and neglect other attributes of an intervention that matter to people with vision disability, such as capability, choice, dignity and empowerment. These attributes, however, may be captured in CBA with a willingness-to-pay (WTP) approach. CBA expresses benefits of an intervention in monetary terms and enables cross-sector comparisons of various interventions (e.g. in the housing, educational, environmental sectors). The intervention is said to have a positive net present value (NPV) if the total amount of benefits is greater than the total amount of costs. Chapter 4 reports a CBA using a WTP method to elicit values of O&M programs from three perspectives: the general public, current and potential users of the programs. The adjusted NPV of the O&M programs, in Australian Dollars, is $3857 (95% CI: $3760 - $3954) per client, accounting for study perspective, sex, occupation, income and self-rated health. On average, the general public were willing to pay more ($6716, 95% CI: 6373 - 7060) for the O&M programs than the experienced users ($5903, 95% CI: $5141 - $6665) and the potential users ($5569, 95% CI: $4931 - $6207), holding other socio-economic factors constant. The high WTP values from the general public indicates strong community (and by implication, taxpayer) support for O&M programs. This study demonstrates that a well designed and implemented WTP survey can be a useful tool to value the economic benefits of a vision disability intervention as it imposes no restrictions on which dimensions of benefits people are permitted to choose to express their preference. This technique, however, does not address equity and distributive issues, and should be supplemented by other means, such as a disability inclusive qualitative study. Chapter 5 adopted a disability inclusive qualitative study to assess if the personalised resource allocation, via a new social reform in Australia (the National Disability Insurance Scheme, NDIS), has delivered the right outcomes to people with vision disability. This qualitative study reveals that, at its early stage, the NDIS has increased choice and control for people with vision disability over ways to utilise and manage their funding and consequently provided them a sense of control and empowerment. However, the NDIS has not fully achieved the objectives of efficiency, responsiveness, quality and equity. Through a lens of macroeconomics and the quasi-market framework, we identify the factors that have facilitated the NDIS objectives, including effective advocacy, balanced regulations to maintain quality and accountability, opportunities for innovative and diversified service models, and providers’ motivation for cost-effectiveness; and, factors that have inhibited the NIDS objectives including insufficient competition, workforce shortage, price caps, imperfect and inaccessible market information, high transaction costs and uncertainty, ‘cream skimming’ behaviour, inadequate training for the NDIS staff, complicated and lengthy NDIS processes, and questionable eligibility assessment. Despite economic evidence being crucial to priority setting and resource allocation, it is alarming that Australia as well as many other OCED countries lack sufficient health economic research in the vision disability sector. The findings of this thesis have significant implications for the understanding of person-centred outcome measurement and personalised resource allocation in the vision disability sector in Australia