The public mental health revolution must privilege lived experience voices and create alliances with affected communities
Authors: Helen L. Fisher
Journal: World Psychiatry (2024)

The paper by Kirkbride et al in this issue of the journal1 presents a masterful and comprehensive overview of the existing evidence demonstrating associations between an array of adverse social experiences and circumstances and the development and persistence of mental ill-health. It proceeds by providing a rallying cry for a revolution to topple the dominant focus of psychiatrists and resource-allocation models by service commissioners on treating existing mental disorders. Although they are careful to acknowledge how fundamental the current approach is, they claim that it has little more to offer in terms of moving the needle on alleviation of mental distress in the population. They call for this prevailing approach to concede substantial ground to make way for primary prevention strategies that tackle the key social determinants of mental ill-health. They convincingly argue that this transformational shift is essential if we are to make any significant progress in reducing the onset and burden of mental disorders across the globe. They particularly highlight the modifiable properties of social determinants as promising targets for preventive interventions to rejuvenate the largely stagnant field of treatment innovation in psychiatry. However, there seems to be an absence of the voices of those with lived experience of social adversity and mental health issues within this review and the roadmap it presents for improving mental health across the population and reducing inequities in mental ill-health. For far too long, the very people we are trying to help have been excluded from the spaces in which decisions are made about how to study and treat them. This simply cannot continue. Not only is it morally wrong, but it can lead to wasting precious funding resources on attempting to answer research questions that have no relevance to wider society, and to the delivery of services that are inaccessible, unacceptable or do not meet the needs of people within local communities2. In 2021, the World Health Organization published a report entitled "Nothing for us, without us"3, which specifically advocated for the inclusion of individuals and communities with first-hand experience of mental health issues and social determinants in designing policies, interventions, and research programs to enhance effectiveness and equity by ensuring that these have relevance and buy-in from the populations they are targeting, and that nobody is left behind. Therefore, the design, delivery and evaluation of primary mental health prevention and promotion strategies and interventions should at the very least be informed by those most affected by the social and mental ill-health inequalities emphasized by Kirkbride et al, and preferably involve those with lived experience in equal partnership2, 3. Ideally, we would reach a point in the near future where those with lived experience will lead research and interventions to improve population mental health. Additional social and financial support plus a high degree of flexibility are likely to be required to ensure that people from the most marginalized sections of our society can be included in these conversations, as they often face multiple barriers to involvement. This will be crucial to avoid reproducing the systemic inequities that plague our society. There are an increasing number of examples of successful involvement of people with lived experience in both research and clinical practice, with some even involving them throughout the whole process from design to implementation and dissemination4. This reaps benefits not only in terms of increased robustness of research and enhancing its translation into practice2, but also provides opportunities for those with lived experience to develop new skills, increase their self-esteem, and be empowered3, 4. This in turn is likely to result in positive benefits for their mental well-being and future prosperity. Moreover, funding bodies in the UK (e.g., the Wellcome Trust, UK Research and Innovation, MQ mental health charity) and around the world are realizing the importance and value of including those with lived experience of mental ill-health in developing the content of funding calls, rating applications, and sharing decision-making, by providing them with seats at the table for funding panels. These practices could easily be extended to those with lived experience of social adversity, and indeed the Violence, Abuse and Mental Health Network (www.vamhn.co.uk), one of the national mental health networks funded by UK Research and Innovation, involved trauma survivors in the design of its grant funding calls and criteria for rating applications, as well as in the selection of which applications to fund. It is also important to engage and partner with marginalized and minoritized people from local communities and community-based organizations to create preventive interventions that are accessible, acceptable, inclusive and engaging, which will ultimately underpin their effectiveness3. As Kirkbride et al flag in their review, there is often entrenched mistrust of mental health care providers among minoritized groups (especially those from ethno-racial and LGBTQ+ communities), due to historical and recent experiences of discrimination, which together with stigma can present a major hurdle to ensuring that the services provided are actually used by those who may require them the most5, 6. Moreover, interventions may need to be adapted to meet the specific needs of marginalized and minoritized communities – for instance located in places that can be easily reached by public transport or are familiar and non-stigmatizing (e.g., shopping centres, barber shops, primary care health centres, cafés) – and provide support with intersecting issues such as poor living conditions, debt, physical health problems, discrimination and other forms of trauma. Indeed, mental health interventions that have been adapted for people from minoritized groups have shown some benefits over more universal treatments7, and health care co-located with welfare advice services has demonstrated improved mental health and financial outcomes8. Therefore, it will be crucial to ensure that prevention efforts are co-designed with minoritized communities and ideally delivered in collaboration with grassroots and community-based organizations, so that whatever is developed is acceptable, accessible, inclusive, and subsequently effective. Centring the voices of those with lived experience of mental health issues and social adversities, such as sexual violence, will also be essential to minimize the likelihood that the policies and interventions developed cause further harm9. Without the involvement of the people and communities affected, many of the proposed public mental health interventions are doomed to fail. I would therefore urge academics, clinicians and policy makers to privilege the voices of those with lived experience of social adversity, mental health issues, and marginalization as they march forward into this public mental health revolution. It will be crucial for them to strive to share power equally with the communities affected when designing, implementing and evaluating these preventive strategies, if they are to develop acceptable and effective interventions, and succeed in overthrowing the current state of affairs.