Chapter 2: The importance of data, evaluation and research
Innovation in the way we collect and use data, research and evaluation is vital to form a comprehensive picture of mental health in Australia, and to effectively monitor, evaluate and report on mental health and suicide.
The Commission welcomes the increasing focus on strengthening the evidence base for mental health and suicide prevention. Decision making, policy and program development, and service delivery are facilitated by robust and timely collection and use of data, effective evaluation, and innovative and targeted research. This chapter presents current data on prevalence and burden of disease, and discusses recent activities in data collection, evaluation and research.
Prevalence and burden of mental illness and suicide
The Productivity Commission has estimated that mental illness and suicide cost the Australian economy up to $70 billion in 2018–19, and that the cost of disability and premature death due to mental illness, suicide and self-inflicted injury was a further $151 billion. It is predicted that global costs of mental illness will more than double from US$2.5 trillion in 2010 to more than US$6.0 trillion by 2030. This means that mental illness will represent more than one-third of the global economic burden attributable to noncommunicable diseases.
The burden of mental illness and suicide in Australia is substantial. In 2015, mental illness and substance use disorders were responsible for 12% of the total burden of disease in Australia, making them the fourth biggest contributor to Australia’s total burden of disease. Mental illness and substance use disorders were the second largest cause of nonfatal burden in Australia (23%), and accounted for almost half of the nonfatal burden in people aged 15–30 years. Suicide was the leading cause of death among people aged 15–49 years in 2019 and, together with self-inflicted injuries, accounted for an estimated 6% of the total years of life lost in Australia in 2015.
To address the economic and social burden of mental illness and suicide, we need to understand the extent to which the population experiences mental illness. There are currently four national population surveys that provide an overview of the prevalence and impact of mental illness in Australia. These include the suite of surveys under the National Survey of Mental Health and Wellbeing (Box 3) and the Australian Bureau of Statistics (ABS) National Health Survey. Current prevalence estimates are presented in Snapshot 1. Reliable and timely data on suicide and suicide-related behaviours also helps to inform approaches to suicide prevention. Selected data on suicide and psychosocial risk factors is presented in Snapshot 2.
The National Report 2019 highlighted the importance of data for policy development and system reform. The Productivity Commission’s final report also emphasised the significance of data and recommended that national prevalence estimates are routinely collected no less than every 10 years.
Box 3: Mental health prevalence data
Australia’s currently available prevalence data on mental illness and suicide was collected by the National Survey of Mental Health and Wellbeing. The suite of surveys under the National Survey of Mental Health and Wellbeing was a program of three mental health epidemiological surveys:
- • National Survey of Mental Health and Wellbeing—a population-based survey of adults aged 16–85 years, most recently conducted in 2007
- • National Survey of People Living with Psychotic Illness—a service-based survey of adults with psychotic disorders, most recently conducted in 2010
- • Australian Child and Adolescent Survey of Mental Health and Wellbeing (Young Minds Matter)—a population-based survey of children and adolescents, most recently conducted in 2013–14.
All three surveys based their classification of mental disorders on existing diagnostic criteria to estimate prevalence. Prevalence estimates will be updated through the Intergenerational Health and Mental Health Study (see below). Until then, the National Survey of Mental Health and Wellbeing remains the only national estimate of common mental distress in adults that captures undiagnosed mental disorders. Data from the National Survey of People Living with Psychotic Illness, and the Australian Child and Adolescent Survey of Mental Health and Wellbeing provides the only reliable, national estimates for psychotic illness and mental distress in children and adolescents.
In August 2019, the Australian Government committed to funding another collection of prevalence data through the National Study of Mental Health and Wellbeing, as part of the Intergenerational Health and Mental Health Study, which will consist of four surveys over three years. Although it is a one-off study, it is hoped that future collections will occur.
The first phase of the Intergenerational Health and Mental Health Study has commenced. The study will measure the prevalence of mental illness, and provide updated statistics and insights into the impact of mental, behavioural and other chronic conditions on Australians; the use of health services and barriers to accessing them; and other health topics.
Snapshot 1 – Prevalence of mental distress
Figure 1: High and very high levels of psychological distress in men and women, by age group, 2011-12 to 2017-18
- - 2.4 million (13%) adults experienced high or very high levels of psychological distress in 2017–18.
- - This pattern varies by gender and age.
Figure 2: Prevalence of mental disorders
- - 46% of people aged 16-85 years will experience a common mental disorder in their lifetime.
- - 20% experience a common mental disorder each year.
Figure 3: 12-month mental disorders, by major disorder group
- - 22% of women will experience a common mental disorder compared to 18% of men.
- - Men (7%) are twice as likely as women (3%) to experience substance use disorder.
Figure 4: 12-month mental disorders, by major disorder group
- - 14% of children and adolescents aged 4-17 experience a mental disorder each year. The rates of different disorders vary by gender.
Table 1: Number of people with psychotic illness in contact with public specialised mental health services
- - An estimated 64,000 people with a psychotic illness are in contact with public specialised mental health services in a 12-month period.
Table 2: Suicidal ideation, suicide plans and suicide attempts among 12-17 year-olds, by sex
Snapshot 2 – Suicide and self-harm
Figure 5: Suicide deaths, by sex, 2019
- - 3,318 people died by suicide in Australia in 2019 (12.9 suicide deaths per 100,000 population.
- - This is an average of about 9 deaths per day.
- - Males are 3.14 times as likely as females to take their own lives.
Figure 6: Suicide deaths, by age group and sex, 2019
- - Almost three quarters (75%) of people who died by suicide were aged 20-59 years.
Source: Suicide and Self-harm Monitoring. National Mortality Database—Suicide (ICD-10 X60–X84, Y87.0)
Figure 7: Hospitalisations for intentional self-harm, by sex, 2018–19
- - There were more than 29,400 hospitalisations for intentional selfharm in 2018–19.
- - Two-thirds (64%) of hospitalisations for intentional self-harm were for women.
Source: Suicide and Self-harm Monitoring. National Mortality Database—Suicide (ICD-10 X60–X84, Y87.0)
Table 3: Suicide deaths of children and young people, 2019
- - 384 children and young people died by suicide in 2019.
- - Suicide accounted for 40% of deaths for people aged 15-17 and 36% of deaths for people aged 18-24.
Source: Suicide and Self-harm Monitoring. National Mortality Database—Suicide (ICD-10 X60–X84, Y87.0)
Table 4: Suicide deaths, by Indigenous status, 2019
- - 195 Aboriginal and Torres Strait Islander people died by suicide in 2019.
- - This accounted for 6% of all suicides in 2019 and is twice the suicide rate of non-Indigenous Australians.
- - Suicide is the fifth leading cause of death for Aboriginal and Torres Strait Islander people.
Sources: Suicide and Self-harm Monitoring. National Mortality Database—Suicide (ICD-10 X60–X84, Y87.0); Australian Bureau of Statistics. Causes of death, Australia, 2019.
Developments in mental health data collection
The availability of, access to, and use of, timely data can facilitate improvements in mental health service delivery, promotion and prevention. This is consistent with the World Health Organization’s Mental Health Action Plan 2013–2020, which has highlighted the need to strengthen information systems, evidence and research as a key mental health priority.
Australia has made some investments in the collection of national mental health data since the beginning of the National Mental Health Strategy in 1992. This has resulted in quality data on use of mental health services, seclusion and restraint, and consumer experiences of services and clinical outcomes such as the Your Experience of Service (YES) National Best Endeavours Data Set (Box 4).
Box 4: Your Experience of Service survey 2018–19 results
The Your Experience of Service (YES) survey aims to help mental health services and consumers to work together to build better services, by helping to identify specific areas where consumers believe quality improvements can be made. The survey asks respondents to rate their experience of care. It also asks questions about how often the service showed respect for their dignity and privacy, and actively included them in deciding their own care.
The detailed results can be used by services to inform ongoing improvement efforts and can also be aggregated to provide an overall picture of the performance of mental health services. Currently, three states—New South Wales, Queensland and Victoria—have implemented the YES survey in mental health–related hospital and community mental health settings, and are contributing to a publicly reported data collection.
There are differences in how each state uses the YES survey. In New South Wales, consumers are offered the YES survey during every hospital stay or community health centre visit. In Victoria and Queensland, consumers are offered the YES survey in a particular week or month of the year. While each state has chosen the survey delivery method that best suits their local needs, differences in collection practices make comparison difficult and reduce opportunities for jurisdictions to learn from each other about how best to meet consumer needs.
In 2018–19, 31,282 YES surveys were collected from 86 mental health service organisations. Results suggest that the majority of mental health care provided meets the needs of consumers, with more than 70% of respondents across the three states rating the admitted care (acute care) they received as ‘good’, ‘very good’ or ‘excellent’. However, 14–25% of consumers reported a ‘fair’ or ‘poor’ experience of their admitted patient mental health care (see Figure 8).
Figure 8: Consumers’ experience of care ratings, admitted patient care, by state, 2018–19
Source: AIHW. Mental Health Services in Australia. Consumer perspectives of mental health care.
Your Experience of Service Primary Health Network survey
In 2018, the Australian Government Department of Health funded the Australian Mental Health Outcomes and Classification Network to develop a version of the YES survey suitable for use by Primary Health Network (PHNs), with a focus on consumers receiving mental health services and, potentially, alcohol and other drugs services.
A co-design approach was taken to ensure that the views of PHNs, commissioned service providers, and consumers and carers informed the content of the measure. The draft survey was tested in several PHNs. Analysis of the field trial data indicated that the survey demonstrated good internal consistency and satisfactory test–retest reliability. In April 2020, the survey became available for use by all PHNs.
Attention to the reliability and reporting of data related to suicide deaths has continued to increase. The evidence produced by collective government efforts has been supplemented by evidence produced via robust academic research through Australian academic institutions and international research (Box 5).
However, gaps and limitations in Australia’s mental health data infrastructure hinder attempts to develop timely evidence-based policy responses, as well as attempts to monitor the performance of the mental health and suicide prevention system.
Some key issues identified by the Productivity Commission in its report include the following:
- • Data is currently underutilised because of restrictions on access and use, or because it is not fit for purpose.
- • Limited data linkage affects the ability of policy makers and decision makers to understand the broader impacts of mental illness and distress on consumer and carer outcomes, access to health and non-health services, and the social determinants of mental health and suicide-related behaviours.
- • Establishing, collecting and maintaining national datasets can be costly and burdensome, resulting in long delays between collection and release.
- • There continue to be significant data gaps, including outdated data on prevalence and service use; limited information on services provided by nongovernment organisations and MBS-rebated practitioners; limited information on particular demographic groups (such as Aboriginal and Torres Strait Islander populations, multicultural groups and LGBTIQ+ people), and limited information on mental health impacts in sectors such as education, employment and social services.
Without these vital pieces of information, the current picture of mental health in Australia is incomplete. The Commission supports the need for a more coordinated, forward-thinking national approach to data collection, including the type and quality of data collected. This will require collaboration across jurisdictions and key stakeholders, and clear coordination points for collation and interpretation of data received.
Box 5: Recent developments in data collection and research
National Suicide and Self-harm Monitoring System
In April 2019, the Australian Government committed to establishing a new national system for collating and communicating information on suicide and self-harm. The Australian Institute of Health and Welfare (AIHW) is working with the Commission to develop this system, with support from an Expert Advisory Group and Lived Experience working group.
The public interface was released in September 2020 on the AIHW website (and is accessible from the Commission’s website). A separate state and territory information portal will be available in mid-2021 to support government policy makers and program managers. The content on both sites will be regularly updated as new data becomes available.
The national monitoring system will improve the coherence, accessibility, quality and timeliness of national data and information on suicide, suicide attempts and self-harm. The system will provide a more nuanced understanding of who is at immediate risk of suicide and who may be at heightened risk of suicide. A better understanding of this is critical to knowing how to help people at risk of suicide more effectively.
Million Minds Mental Health Research Mission
The Million Minds Mental Health Research Mission (announced in May 2018 as part of the Long Term National Health Plan) will invest $125 million over 10 years from 2018–19 in innovative mental health research. The mission aims to support 1 million Australians with mental health issues access new approaches to prevention, diagnosis, treatment and recovery by encouraging translation of research into practice.
To date, the mission has funded $27.4 million in grants for seven research projects in the areas of Aboriginal and Torres Strait Islander mental health, child and youth mental health, and eating disorders.28 An additional $10.3 million in grants was announced in May 2020 for three research projects focusing on suicide prevention.29 The Australian Government has also announced $3 million of funding under the mission for rapid research into improving the response of mental health and suicide prevention system to the COVID-19 pandemic.
Evaluation and research
Evaluation and research are required, alongside data, to build a comprehensive picture of mental health in Australia, and to drive improvements in policy and practice. Evaluation and research in mental health are also critical to the evidence base for clinical care, to targeted investment in prevention and early intervention, to understanding the progress of existing reforms, and to support the case for future reform.
Routine evaluation provides valuable information about how well programs are working, how they can be improved and new areas for development. Specifically, robust evaluations inform how funding should be allocated to improve service delivery, and ultimately the outcomes for people accessing mental health services.
The Productivity Commission inquiry into mental health highlighted a clear lack of program evaluation across all levels of the mental health and suicide prevention system. It made a suite of recommendations designed to develop and promote a culture of evaluation. Key factors driving this include:
- • limited workforce capability in evaluation
- • insufficient funding, planning and use of evaluation
- • weak incentives to prioritise evaluations, which tend to be costly and resource intensive
- • lack of consistency in how programs are evaluated and the extent to which evaluation findings are shared.
Mental health and suicide prevention research is pivotal in the implementation of new knowledge. It also drives innovation by generating knowledge and evidence about prevention, causes, impacts and treatment of mental illness.
Australia performs well internationally in mental health and suicide prevention research. Analysis of research published in mental health and suicide prevention indicates that, in the category of general mental health, around 12% of Australian publications are in the top 10% of those most highly cited, and around 20% are above world average citations during the past 10 years (2007–2017). Australia is also rated 10th internationally in terms of publication volume, equivalent to about 2.5% across all mental health–related areas of research.
Despite Australia’s strong performance in research, and the significant global and national burden of mental illness, investment in mental health research is significantly lower than for other health-related fields. For example, recent analysis by the International Alliance of Mental Health Research Funders found that, although mental ill-health in Australia and New Zealand accounts for more years of life lived with a disability than physical ill-health, mental health research receives less funding than research into physical conditions such as infections, cancer and cardiovascular disease (Figure 9).
Figure 9: Research funding in Australia and New Zealand for selected fields, including mental health, compared to measures of disease burden
Source: Extracted from International Alliance for Mental Health Research Funders—The inequities of mental health research funding, 2020
At present, mental health research in Australia does not have an overarching strategy and is therefore largely driven by two factors: investigator-initiated grants funded through a variety of peer-reviewed processes such as the National Health and Medical Research Council; and targeted funding through vehicles such as the Medical Research Future Fund (MRFF), where specific research priorities are identified, and investigators apply within that priority area. There is also a dedicated Suicide Prevention Research Fund, established in 2018.
The complexity of the mental health system and the changes it is currently undergoing require the development of a clear strategic approach to prioritising research objectives, targeting research funding, improving data collection and sharing protocols.
The growing understanding of the complexity of mental health also affords an opportunity to review whether current mental health research funding and activity are fit for purpose. A review of both current and past investment in mental health research and the impact of that investment is needed to determine the gaps and opportunities.
Australia’s first national mental health research strategy is currently being developed. It aims to provide a principles-based framework to inform planning, funding, conduct and implementation of mental health research in Australia. A task under the Fifth National Mental Health and Suicide Prevention Plan (Fifth Plan) is to develop a research strategy to drive better outcomes across the mental health sector in Australia. The Commission is working in collaboration with people with lived experience, carers, states and territories, research funding bodies and prominent researchers to develop the strategy.