Blog

What does equity mean in mental health research?

Professor Stephani L Hatch

Professor of Sociology and Epidemiology, Health Inequities Research Group Lead, Institute of Psychiatry, Psychology and Neuroscience, King’s College London

For several decades now, there has been a focus on inequalities and inequities in population mental health research and policymaking. In general, the goal has been identifying and tackling the upstream, primarily social determinants of inequalities and inequities. Underlying many of these inequities are tractable social problems. Across the life course, inequities are, in part, experienced by people who are unnecessarily exposed to intersecting systems of oppression, such as racism, homophobia and ableism, that are often enacted through behaviours such as harassment and discrimination. The consequences are costly – for population mental health, life chances and opportunities, as well as the economy and society. However, key aspects of what we habitually do or to how we solve problems are fundamentally flawed. Not only are our current ways of working and training the next generation fundamentally fraught with inequities, but our approaches are also often fragmented and siloed. As a result, progress has been slow, and impacts limited.

“To make advancements, we must ask ourselves: what if we chose to do things differently?”

To start, we must apply the same critical thinking we utilise in research to building and rebuilding our research cultures, with an expectation that we focus on equity in our ways of working as much as in what we research. This applies to all types of evidence generation, in all contexts and across all sectors. Fundamentally, we should be asking ourselves, how we all might be contributing to generating and perpetuating inequities. Below, I outline how we can collectively accelerate change towards equity in mental health research.

Inclusion as a Practice

Fundamentally, advancements towards equity in mental health research start with systemic cultural change and the embedding of essential core principles, such as cultural humility and cultural safety with an emphasis on inclusion as a practice, and utilising tools such as equity impact assessments. Cultural humility is a process of self-reflection and understanding one’s own implicit and explicit biases and how these biases may influence research^1-2. Cultural safety involves actively creating a safe environment where there is no assault, challenge or denial of identities and needs³. Safety is established through shared respect, meaning, knowledge, collective working, emphasis on dignity and true listening^3-5. Furthermore, while we attend to the mental health, wellbeing and safety of participants, we generally fail to ensure that mental health researchers are included and have support that is adequately funded.

Why is this so fundamentally important? Researchers across sectors are unnecessarily exposed to bullying, harassment and discrimination over their careers. This is an enduring and understudied problem, despite Wellcome’s 2019 survey of researchers (n=4167) reporting that the majority had witnessed bullying or harassment (61%), with 43% reporting direct experiences; and a report commissioned by UK Research and Innovation (UKRI) identifying these adversities as major contributors to poor research integrity^6-7. For many, this exposure to adversity in research environments is a continuation of a life course exposure across social contexts and often starting in early life. These types of adversity are shaped by multiple statuses and identities, entrenched in social context and ultimately limit life chances (e.g., in higher education and occupations)^8-9. It is also not uncommon for there to be interrelated experiences of bullying and harassment with discrimination. This is not limited to experiencing but also includes witnessing and anticipating, all of which have consistent and robust associations with poor health outcomes (particularly mental health) and help seeking practices^8-9.

Equity in Who Conducts the Research

Inclusion as a practice must also attend to inequities in who conducts mental health research. There are persistent gaps in the diversity of mental health researchers, a broken pipeline for many from underrepresented groups (e.g., by gender, disability, race and ethnicity). Basic expectations across sectors needs to shift. Diversity should be the bare minimum expectation, not the goal. Practicing inclusion involves creating more transparent processes, monitoring and accountability, consistently applied across research pipelines with a specific focus on recruitment, retention and recognition. There also needs to be greater parity between academic institutions and non-academic organisations. Building inclusive partnerships requires collective actions on identifying missing voices, centring lived experience, making spaces for voices who have been silenced, creating leadership opportunities at all levels, and importantly adopting co-leadership models across sectors where possible¹⁰.

Making this shift also requires identification and recognition of all forms of power in decision making; acknowledgment of expertise outside academia; improvement in access to training, especially for community and peer researchers; and greater resource sharing, particularly from universities to other sectors¹⁰. For example, the Marginalised Communities programme within the ESRC Centre for Society and Mental Health developed Research Methods: a practical guide to peer and community research¹¹, a freely available, online course on FutureLearn, which now has been accessed by over 17k learners globally. The Centre also created the Research Methods Toolkit¹², exemplifying resource sharing and co-production with those with lived experience. These and the many other examples of this good practice in sharing training and resources are fundamental requirements for collective, inclusive approaches.

Equity in Data Availability, Quality & Access

Another area that needs our immediate attention relates to enduring gaps in mental health data. Here, I primarily focus on quantitative data, given the focus on the Adult Psychiatric Morbidity Survey and how heavily relied upon this resource is for basic population mental health descriptors (e.g., prevalence) and informs population mental health policy.

The fundamental question is, do we have the data necessary to identify and understand mental health inequities for groups with the greatest level of need? Regarding race and ethnicity, the answer is no. The last comprehensive nationally representative survey of racial and ethnic minority mental health for the UK general population was delivered more than two decades ago (Ethnic Minority Psychiatric Illness Rates in the Community (EMPIRIC)¹³. This requires ethnically ‘boosted’ samples that allow for the disaggregation of broadly defined racial and ethnic groups to better enable the identification of inequalities and inequities in mental health and health services and the potential processes contributing to their persistence. To achieve these boosted samples, studies need properly resourced partnerships, engagement with media and communication strategies, and sustained efforts towards building and maintaining trust with communities.

In the absence of data improvements on ethnicity as well as other protected characteristics and identities, we heavily rely on electronic health record data representing those who have been in contact with services. While electronic health record datasets are important, they greatly limit our fundamental understanding of the level of mental health related need in the general population. Furthermore, these existing quantitative data limitations lead to a continued poor understanding of intersecting and complex identities. The repeated aggregation of racial and ethnic minoritised groups contributes to the lack of acknowledgement of the important differences in experiences and social diversity within and between cultures and groups that have pervasive impact on mental health. Furthermore, failure to invest in addressing this key data gap will result in the continued reliance on a weak evidence base when designing interventions.

Improvements in this area will require us to: challenge what we think we know, to obtain a better understanding of current evidence; identify existing evidence and data gaps across the system; and improve strategies and policies for resolving problems and barriers to improved data quality and access.

We can do this by asking these basic questions:

Who is underrepresented in a specific area of research?

What are the underlying causes of these gaps?

What are the potential consequences of having these gaps?

What are the mechanisms that perpetuate these gaps?

How do we fill our gaps in data and knowledge?

Equity in Funding Practices

The final consideration is to achieve greater equity in funding practices. As with researchers and research leaders, funders must require inclusion as a practice and ensure that transparency, consistency and accountability are attended to throughout their processes from the design of a call through to the final decision making. While there have been many advancements and considerations to supporting and resourcing co-produced and participatory research approaches, funders should give more consideration to how they place unnecessary limitations on these goals.

Regardless the funding source, all population mental health research should require evidence of how researchers will practice inclusion, within their teams and in meaningful and deeper, more sustainable engagement with people with lived experience, carers, families and community stakeholders. Where there are participatory approaches, there should be resourced requirements for training provisions, reflective practice and support for community and peer researchers. Fundamentally we need to be moving towards greater parity between academic institutions and non-academic organisations (especially community and third-sector organisations) in funding bids of this kind. For example, funders should remove or increase caps on the proportion of funds that can be allocated to community partners; it is often divisive and a barrier to equity and trust-building.

Regarding design, planning and decision-making, most organisations under-utilise the equity, diversity and inclusion principles and experts among their staff, fail to implement assessment and review related training, or monitor conduct on panels to minimise impact of biased behaviour. There should also be greater involvement of those with lived experience across all stages of funding calls with appropriate renumeration; from setting priorities, designing the call and review criteria to reviewing and having a say on decision-making panels. While many funders have moved in this direction, further improvements are needed. Decision making must include ongoing evaluations of existing policies that govern funding, as well as who, how and what is researched; identify unintended consequences of decisions; integrate siloed approaches and disseminate actionable insights. Enacting this starts with utilising and where necessary, improving existing tools, such as equity impact assessments and equity frameworks through systems-thinking and approaches. Recent examples of cross-sector investments in population mental health and health services research in which my colleagues and I are working to demonstrate what prioritising equity can look like in partnerships, data and policy include: the ESRC Centre for Society and Mental Health; the UKRI Population Health Improvement, Population Mental Health Consortium; the NHS Race and Health Observatory and the Wellcome-funded Collective Action for Race Equity in Health and Social Care.

Next Steps towards Equity

Now more than ever, if we expect different outcomes and advancement in mental health equity, we must think, challenge and engage with each other differently. This will require commitments to implementing more transparent, inclusive and equitable policies and practices in mental health training, education and research. We can all start by demonstrating what difference can look like – becoming inclusive leaders and creating positive research cultures with proactive as well as reactive approaches to addressing bullying, harassment and discrimination; supporting creative advancements in research methods and training; implementing more equitable and transparent research-related policies and funding practices, including addressing persistent data gaps; applying systems, not siloed, thinking and approaches; and never forgetting that our ways of working, engaging and disseminating impact lived experiences of researchers and communities most affected, in ways that improve all our lives and avoid harm.

References

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