Whakairo: carving a values-led approach to understand and respond to the mental health and substance use of the New Zealand population

Good data in the hands of the people is imperative for supporting systems change, upholding Te Tiriti o Waitangi, and addressing inequities.

Epidemiological data provide reliable information on the nature, range, extent, frequency, geographical spread, and duration of health conditions. Good data also provide an understanding of the factors contributing to and protecting against these conditions, and information on the accompanying impact on peoples’ lives.¹

We (the authors) are proposing an innovative approach to defining what good epidemiological data is in the Aotearoa New Zealand context; how to collect it, and most importantly how it can be used to design and offer supports and services that respond to peoples’ needs.

National prevalence surveys

In 2006, the landmark epidemiological study, Te Rau Hinengaro: The New Zealand Mental Health Survey, was published.² For the first time this gave Aotearoa New Zealand population level information on the prevalence of a range of mental health conditions and substance use disorders. The findings from this survey have been used extensively to inform planning a system-wide response to peoples’ needs.^3–5

The data informing Te Rau Hinengaro was collected in 2003 and 2004, so New Zealand’s latest prevalence data is nearly 20 years old. The recommended period between national prevalence surveys is every 8 to 10 years.⁶ Currently we have no accurate and comprehensive population prevalence data to inform policy, service, and workforce planning now and in the future. This is a massive systems-level data gap.

We are very concerned about this lack of robust up-to-date prevalence and impact data. As a group we come from different perspectives and backgrounds including lived experience, psychiatry, research, Māori, and non-Māori. We know that for some people and communities, things are getting tougher, not easier.⁷ An understanding of the different needs of our diverse communities is imperative to effectively support people.

We must move forward with gathering this information. It is unethical not to invest in high quality data to inform such an important area of health service delivery. Robust data on mental health conditions and addiction in the population are crucial to upholding Te Tiriti o Waitangi, achieving equity, and is a Government responsibility.  This data gap has been recognised and highlighted as a priority, notably in the Data Investment Plan for Aotearoa New Zealand, the plan commissioned by the Government Chief Data Steward to guide government investment in data, and in Kia Manawanui: The Long-Term Pathway to Mental Wellbeing.^8,9

A comprehensive study, or series of studies will quantify and identify: (1) the distribution of mental health conditions and problematic substance use in the population; (2) the factors that both protect against and contribute to these conditions; (3) the impact these conditions have on people, whānau, and communities; and (4) where there is need and unmet need. This level and type of information can inform the distribution of resources and support now, and in the future.

Appraising existing data

In July 2022, researchers from Te Pou, a national workforce centre for mental health, addiction and disability, and the Department of Māori Indigenous Health Innovation (MIHI) at the University of Otago started engaging with stakeholders to advocate for a national epidemiological survey. Discussions are being held with a wide range of stakeholders including people involved in Te Rau Hinengaro, Māori academics and clinicians, lived experience and whānau advisors, as well as policymakers, researchers, and clinical professional bodies. The intention is to pull together a collaborative group to advocate for, design, and identify funding for this work.

Te Pou have published a series of reports and resources exploring existing data and commonly used measures for the adult population.^10–12 Similarly, Theodore and colleagues in this issue highlight the inequities for Māori youth compared to non-Māori from an examination of routinely available service use data.¹³ What these, and other recent surveys show is that something different is happening emotionally, particularly for rangatahi, and that there are growing inequities across different priority groups which we must pay attention to.^7,14,15

To respond appropriately and effectively, a better understanding of the person, their whanau, community and their needs is required. This means collecting data that goes beyond the reliance on brief screening measures, like the Kessler-10 (K10), World Health Organization – Five Well-Being Index (WHO-5), or the Alcohol Use Disorders Identification Test (AUDIT). These measure psychological distress, symptoms of anxiety or depression, hazardous drinking, or general wellbeing, which tell us something is going on, but not any wider contextual information or the impact. Brief screening tools are intentionally designed to identify more people, and therefore overestimate prevalence.^16,17 In addition, symptoms such as psychological distress often have peaks and troughs in a population, without similar rises in underlying prevalence of mental health conditions and substance use disorders.^12,18

Global and national events, such as the COVID-19 pandemic and subsequent lockdowns are known to have psychological impacts on the population, but it remains unknown whether there has been a greater shift in underlying prevalence of mental health conditions or substance use disorders, or whether the rises we are seeing in levels of psychological distress are a reactionary peak.

It is not sufficient to rely on service use data as there is large scale underreporting of mental health conditions and substance use disorders, as only around one-third of people experiencing these conditions will seek help.^2,6 This means service use data is inherently biased towards the people seeking and people accessing help, and will be under-representative of particular groups, such as young people, Māori, people from lower socio-economic groups, and people in rural areas. An overreliance on service use data is highly problematic for planning purposes as its use will tend to maintain the status quo.¹

Developing a values-based evaluative framework

While people have told us that they generally support an in-depth epidemiological survey, there are multiple perspectives to consider. To effectively integrate these perspectives, we are proposing an evaluative framework to support the design of the research questions and methods, as well as the analysis, presentation, and dissemination of results. Research methods will be evaluated against criteria within each of the six domains proposed below. This will support critical review of the utility and appropriateness of the design, methods, and dissemination of findings.

From conversations with stakeholders, six domains for the framework have emerged.

1. Taking a Te Tiriti o Waitangi led approach—advancing Māori health.

2. Valuing and including people with lived experience.

3. Utilising scientific methods.

4. Practicality and utility—using and enhancing existing data sets.

5. Inclusive of diverse population groups.

6. Accessible and responsive, with timeliness of data feedback.

We are in the process of working with different stakeholder groups to operationalise these domains and start applying them to the design phase of this work.

Data for change

This epidemiological work is integral to bringing effective and equitable changes to the way we plan, purchase, and deliver mental health and addiction supports. Prevalence and impact data can inform the targeting of current and future investment to support better outcomes for people, whānau and communities, and provide information on the effectiveness of investments.

Prevalence data generate information to help identify where support should be targeted based on need. We know that experiences of distress are increasing, but what this means for mental health and addiction services and other health and social services is unknown.

To speculate on something as important as peoples’ emotional health and wellbeing is not acceptable. The process we are proposing is to carve out a plan to deliver accessible, usable, and reliable knowledge on mental health and substance use that can be used in the hands of people, communities, and the Government to invest well in our population’s mental health and wellbeing now and in the future.

For further information on this collaborative work visit the Te Pou website: Understanding population mental health and substance use | Te Pou; or contact Helen Lockett: helen.lockett@tepou.co.nz or Cameron Lacey: cameron.lacey@otago.ac.nz