Can data and well-articulated findings tell you what injustice feels like? What it sounds like? What it tastes like? Can they tell you how it is to survive violence on a daily basis? Can they speak of the reality of living on the streets or living with a chronic illness? Can they express how these things impact mental health? On their own, not really. But those people who have experienced it can.
Mental health science becomes truly relevant and meaningful when expertise by profession and expertise by experience join in the design and development of research. Nothing can replace an inner perspective on a given issue; it’s an invaluable insight that can inform and shape how we go about studying the matter. That’s why many of us are passionate about involving people with lived experience in studies right from the start. Usually, the first step, recruiting the relevant people, is quite straightforward: research about PTSD, for example, will involve people who have experienced PTSD and have an interest in research.
But what happens when we look at the mental health of the general population? Who are the experts by experience then? Who do we involve and how?
These are the questions that I set out to explore in my role as ‘Public Involvement Coordinator and Researcher’ on the Public Mental Health Programme of the NIHR School of Public Health Research. If the name hasn’t already made it clear (or the acronym: NIHR SPHR PMHP), let me say that this is a large and complicated topic. Add to this the relatively new approach of academics working in partnership with people with lived experience, minus a blueprint for how to do this when the relevant lived experiences are those of the whole population. The result is a particularly complex challenge.
But what comes with complexity? Learning! And that is why this work is exciting: we are treading new paths (I think). Some will prove useful, some less so, some may end up being a profoundly meaningful addition to the landscape, some we could have hiked better…but ALL we can learn from.
My journey started off with the recruitment of a team of Peer Researchers, who essentially had the daunting task of ‘representing the public’. As public mental health is so broad in its inclusions and so vast-ranging in its applications, I had to grapple with how to meaningfully reflect public ‘lived experience’ via a small team and how to decide who becomes part of such a team.
Let’s be clear: I know we can’t reflect the full beautiful breadth of our population in a team of 5 people. We can only do the best we can.
But wait a minute, if the public is everyone, why not randomly pick rather than choose people to join the team? I believe it is important to choose because there are groups of people that are overrepresented in public discourse. Voices from these groups are important but so are those of other less-heard, less-visible groups. If we attempt to capture the public voice, we should capture it in its variety and diversity to ensure that our definition of the public is as inclusive as possible.
So how do we do this? I don’t have any firm answers as we are very much still exploring and learning but I found it was helpful to keep the following considerations in mind:
- Be clear that a population’s mental health is not a population’s mental illness. Mental health on a population level refers to the entire spectrum, from severe disability to absolute wellbeing and all the ambiguities in between. More specifically, it looks at what drives poor mental health and what helps people live well with their mental health.
- Carefully consider what ‘the public’ means. This is both tricky and critical. The perception and definition of the public by researchers, mental health professionals and policymakers can have positive or adverse impacts on public mental health. Perception inevitably shapes definition and definition inevitably shapes inclusion, which inevitably shapes exclusion. For example, if the perceived public is the people of England, the definition could be ‘all residents of England’, yet this misses out all who live – or survive – in England but have no home to call their own. Another definition could be ‘all women and men of England’, but this dismisses people who cannot tick either of these boxes because they are not cis-gendered or they identify as non-binary. I would argue that it is the individuals that we lack in our perceptions and lose in our definitions that have the most relevant experiences for these are the people whom society has failed. And we all know that we cannot judge how well a system is doing based on how it treats the privileged. Instead we need to consider how it responds to the underprivileged, the minorities, the unspoken for. If a system can include the most deprived, it can include everyone. If it can serve the most vulnerable, it can serve everyone.
- Be mindful that considerate theoretical definitions do not automatically translate into considerate practice. Our heritage of exclusion and discrimination combined with inherent hierarchies and the pervasive stigma that surrounds mental health can make it very challenging for public mental health to reach and engage with the full diversity of the population. This means that even a ‘perfect’ definition of the public that encompasses all classes, all ages, all genders, all ethnicities and all cultures can only do so much. This means that throughout the project, we need to think carefully and creatively about how to work in an accessible and inclusive way, not just at the beginning.
It’s with all of this in mind that I approached the recruitment of five Peer Researchers now working on the PMH Programme. I am proud to say that as much as this limited number of people could, we do hold a great richness of diverse identities, experiences, ages and locations. We have worked together for just over four months and in this time, not only has the programme been shifted and shaped by the Peer Researchers, but Public Involvement in PMH as a practice has also been shifting and shaping. We are experimenting with different ways of engaging people in the research and new ways of sharing the findings, including #IamPublicMentalHealth (because we all are) on Instagram.
We are walking known paths in unknown ways, unknown paths in known ways and, of course, unknown paths in unknown ways. We have learnt a lot so far, but the best part is that there is still so much to come.
Laura E. Fischer