Whakairo: A values-led approach to psychiatric epidemiology

Introduction

Health research that addresses social issues cannot escape a discussion of the values that underlie the frameworks and choices used by both researchers and decision makers. (Bayoumi and Guta, 2012: 45)

A growing body of researchers recognise the importance of making explicit the values underpinning epidemiology theory and methods. This is particularly important when research seeks to address social issues and given the role of research in advancing (or disadvantaging) health outcomes.

In Aotearoa, New Zealand, health and social care systems privilege non-Māori, and this has contributed to significant and growing health and socioeconomic inequities. There is also an entrenched structural discrimination across the whole health system affecting people who experience mental health challenges and problematic substance use, as evidenced in the continued gap in life expectancy and access to economic resources.

What is less well understood is the intersection of the experiences of mental health challenges, problematic substance use, ethnicity and discrimination within the health system and the impact on whānau (extended family) and communities. Knowledge generation in this area is crucial to plan and deliver supports and services that are effective for populations facing the greatest health inequities.

We (the authors) are giving thought to how psychiatric epidemiological investigation can contribute to this knowledge gap and particularly how it can be led and informed by the values of people with lived experience and te Ao Māori (Māori world views).

As tāngata whenua (people born of the land), any epidemiological research in Aotearoa New Zealand must prioritise a by Māori, for Māori approach in governance, methods, dissemination and uptake of findings. We also need to uphold and honour the experiential knowledge of people with lived experience of mental health challenges and problematic substance use.

We share some of our ideas and thinking to date in this editorial with the hope of stimulating and widening the discussion and practice of values-led psychiatric epidemiology. This is timely in Aotearoa, New Zealand, as we begin to design the research needed to understand the prevalence and impact of mental health challenges and problematic substance use.

As authors, we recognise that we bring our own values and perspectives – Māori and non-Māori, lived experience of mental health challenges and problematic substance use, alongside psychiatry, research, workforce development and policy expertise.

Making explicit different values

Researchers across multiple countries, including Aotearoa New Zealand, are exploring indigenous approaches to epidemiology and what this means for the theory and practice of psychiatric epidemiology (Paine and Cormack, 2020).

The epistemology of psychiatric epidemiology is rooted in the science and values of medicine as practised in Europe and North America. This has led to the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases largely guiding the development of the methods and measures used to conduct psychiatric epidemiological research.

These approaches are not necessarily aligned with indigenous world views, where mental health is viewed holistically, considering physical, social, spiritual and emotional wellbeing. Nor are these approaches necessarily consistent with the strengths-based and recovery-focused perspectives of people with lived experience of mental health challenges and problematic substance use. Furthermore, as Basit and colleagues’ study (published in this issue) illustrate in their investigation of the diagnostic accuracy of the Composite International Diagnostic Interview (CIDI) with Aboriginal and Torres Strait Islanders, measures may be suitable for diagnosing some mental health conditions, but the accuracy for others is questionable (Basit et al., 2023).

Holding and balancing these differences is crucial if we are to conduct epidemiological research which has meaning, value and utility to multiple stakeholders and population groups. This is particularly important when the knowledge generated is used to inform targeted investment of limited resources in the delivery of mental health and addiction supports and services.

The need for up-to-date prevalence data in Aotearoa, New Zealand

In July 2022, the Department of Māori Indigenous Health Innovation (MIHI) at the University of Otago, Christchurch, in partnership with Te Pou, a national workforce centre for mental health, disability and addiction, started engaging with stakeholders to advocate for a national epidemiological survey or series of surveys.

The last national epidemiological investigation in Aotearoa, New Zealand, that used structured interview measures was conducted nearly 20 years ago. The knowledge generated from that investigation, Te Rau Hinengaro: The New Zealand Mental Health Survey was fundamental to informing the current mental health and addiction system locally. However, the survey findings are now well out of date.

More recent data collected using brief screening measures, shows increasing rates of psychological distress and disparities between different population groups, particularly young people and Māori youth (Sutcliffe et al., 2022). These findings indicate the need for carefully planned and designed approaches to studying the mental health challenges and problematic substance use of the population (Lockett et al., 2022). Essential mental health and addiction supports and services need to be based on, and responsive to, population need. It is unacceptable that we have no current detailed understanding of these needs.

If, as the recent data indicate, there is a changing profile of experiences, we need to understand what the changes are, and for whom. We need detailed information to plan supports and services and ensure the equitable distribution of resources. The system designed for people with mental health challenges and problematic substance use nearly 20 years ago, is unlikely to be the system needed to support people today with a different profile, experiences and expectations.

Data from brief screening tools

While screening tools, like Kessler-10 (K10), World Health Organisation – Five Well-Being Index (WHO-5) and the Alcohol Use Disorder Identification Test (AUDIT) indicate there are changes in the patterns of mental health and substance use of the population, the knowledge generated does not provide the detail needed to design services and supports appropriately. Moreover, screening tools are intentionally designed to be over-inclusive and therefore likely overestimate the underlying prevalence (Thombs et al., 2018).

The first wave of findings from the Intergenerational Health and Mental Health Study (IHMHS) Australian prevalence study shows that one in five adults experience mental health conditions or substance use disorders each year, similar to Te Rau Hinengaro. Nevertheless, while overall rates have not changed over time, anxiety has increased among young people, and young females aged 16 to 24 have the highest rates of any mental health condition (Australian Bureau of Statistics, 2022). While the data have been analysed by age and sex, ethnicity has not yet been examined.

This first wave of findings from the Australian study highlights issues inherent in relying only on data from brief screening tools, as we currently do in Aotearoa New Zealand. The Australian study compares K10 scores with the CIDI and finds about two-thirds (64.2%) of people with high or very high levels of psychological distress (as measured by K10) meet diagnostic criteria for a mental disorder in the past 12 months. This also means over one-third (35.8%) of the people who report high or very high levels of psychological distress did not meet diagnostic criteria for a condition in the past year (Australian Bureau of Statistics, 2022).

Holding and balancing different values

We have been in discussions with a range of stakeholders, including people instrumental in developing and conducting Te Rau Hinengaro, along with Māori academics and clinicians, people with lived experience, family and whānau advisors, policymakers, researchers and clinical professional bodies.

There is strong consensus among stakeholders on the need for more up-to-date robust data on prevalence and impact. There are diverse perspectives on how this research should progress. We believe it is possible to hold and balance these perspectives if we set out, from the outset, a values-led evaluative framework that articulates different values to inform this research.

We are proposing the evaluative framework’s six domains are: (1) advancing Māori health; (2) valuing and including people with lived experience; (3) ensuring scientific rigour; (4) practicality, utility and ongoing sustainability; (5) inclusive of diverse population groups and (6) accessible and responsive with timely feedback of data.

A set of criteria will be developed for each domain, based on a review of available literature and discussions with stakeholders. Once consensus is reached, the criteria will be used to continually evaluate the research process. Outlined below is how we have started to envisage these criteria are developed from the values of lived experience and indigenous world views.

Honouring lived experience values

The values of the lived experience workforce have been articulated (Te Pou, 2021) and reflect, to a wider extent, the values of people experiencing mental health challenges and problematic substance use. As we look to develop criteria to operationalise these values and apply to psychiatric epidemiology theory and methods, we need to hold a range of lived experience perspectives in tension.

Our starting point is developing a long list of criteria, from which to consult more broadly on. We are developing this from conversations with a small group of lived experience leaders, reviewing three recent Aotearoa, New Zealand documents – He Ara Oranga: the Report of the Government Inquiry into Mental Health and Addiction, the Wellbeing Manifesto and the Competencies for the Consumer, Peer Support and Lived Experience Workforce and the international CHIME (Connection, Hope, Identity, Meaning and Empowerment) recovery model.

We believe any good approach to psychiatric epidemiology should be grounded in principles, to ensure we get it right – primarily for people experiencing mental health challenges and problematic substance use, but also for those who will use and apply the resulting data. When we get it right for those with lived experience, people are at the centre and we are building a people-centred approach to services and supports, with integrity and intention.

‘Getting it right’ for people with lived experience is not an optional extra, nor do we believe it weakens the approach to science and statistics. The articulation and use of a robust values-led evaluative framework provides a mechanism to hold and balance multiple perspectives at once and apply critical thought to the methods and processes used in the study.

Honouring Indigenous values

There has been enormous growth in indigenous research methodologies which aim to enhance the potential for research to contribute to indigenous health gain. Common epidemiological approaches have been criticised for merely cataloguing stories of pain. By doing this, there is a risk of reinforcing ethnicity as a contributory factor for mental health challenges and problematic substance use rather than recognising ethnicity as a marker for exposure to factors that are largely the legacy of colonisation, both historic and contemporary. Māori epidemiologists and researchers have called for ‘a more compassionate epidemiology . . . a system of enquiry that is pluralistic, inclusive and responsive’ (Paine and Cormack, 2020).

As we consider Māori values leading and shaping the planning and implementation of a national prevalence study, one approach to operationalisation, and to continually check we achieve this, is to utilise the CONSoIDated critERia strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement. This statement provides a checklist to maximise the potential for Māori health advancement by enhancing Māori partnerships across the research governance, relationships, prioritisation, methodologies, participation, capacity, analysis, findings and dissemination (Huria et al., 2019).

Concluding thoughts

We believe the creation and adoption of a values-led evaluative framework is critical to shaping the theory and methods of psychiatric epidemiology. If we design our data needs based on the status quo, we will not achieve the transformation called for in He Ara Oranga and deliver the supports hoped for by those for whom the current system is not serving. We must gather data to help design for equity. We must balance multiple perspectives, particularly the values of lived experience and indigenous people. When we uphold the values important to people, we can build solutions based on the knowledge generated by psychiatric epidemiology that brings meaningful change for people.