This article was written by Jamie Morgan, Niharika Maggo, Grace Gatera, Shuranjeet Singh
For the last seven years the annual MQ Science Summit has platformed innovative and interdisciplinary scientific meetings for those across the mental health landscape. This year the summit was held virtually with three core themes: children and young people's mental health, mental health inequalities, and mental health in the COVID era.
With this in mind, the Wellcome Trust’s mental health team was invited to contribute to the day’s discussions. Within the mental health team, a group of Lived Experience Advisors were given the responsibility to plan and deliver a keynote speech on Day 1 of the summit.
Across 6 weeks a small team of lived experience advisors imagined, ideated and recorded a keynote speech which considered the opportunities and obstacles concerning lived experiences in mental health research. As a team, we wanted to pose the various opportunities which the integration of lived experience expertise affords to mental health researchers and research. Within this, we also wanted to be aware of the obstacles which face the mental health landscape to ensure that lived experience expertise is centred in ways which are reflective and substantive, rather than superficial and tokenistic.
This blog post summarises some of the key points shared by the advisors to an audience of researchers, policymakers, activists, advocates, and academics.
You can view a video of the keynote here alongside other segments of the summit.
Ask this question to yourself - are people with lived experience in the room (consulted) when you are forming policies and programs for them?
"Nothing about us without us" -Niharika
As a lived experience advisor, being involved in mental health programs and activities has helped me feel less lonely, develop a stronger sense of purpose, offer my expertise and make a difference on an issue that I earlier saw in insolation.
According to WHO, half of all mental health conditions start by 14 years of age. Millions of people experience anxiety and depression in their life. People with actual lived experience of mental health problems have been an untapped resource until now with much to offer.
The disability rights movement has the philosophy of “nothing about us, without us” - the same when applied to mental health can help us prevent exclusionary policies and actions, while also taking advantage of the experiences these experts have.
What we need to remember and really focus on is that people with lived experience should not be looked at as mere add-ons. They must be meaningfully involved in every domain of mental health activity including service delivery, research, training, and governance.
When put into action, the “don’t talk about us without listening to us” mantra can benefit all who care about mental health for individuals, communities and societies. I would urge everyone present at this wonderful conference today to ask this question to yourself - are people with lived experience in the room (consulted) when you are forming policies and programs for them? Are you ready to expand this bubble and give space to lived experiences?
Building research skills of lived experience experts and leaders - Jamie
It is also crucial to build the research skills of lived experience experts to challenge existing inequalities in research, which may make work harder and less accessible for lived experience collaborators. Certain expectations or stereotypes might lead both the researcher and lived experience expert to think that researchers may have fears and concerns about working with people who have had mental health issues and who are inexperienced in research. Likewise, service users may be intimidated by the idea of ‘research’ and by the status of research professionals. If researchers begin collaboration with this kind of view, and if they think that they alone are the expert, then the prospect of collaboration is considerably weakened.
To combat this, it is important that an open and flexible approach is adopted when working with each other. It may also be useful to encourage those with lived experience to familiarise themselves with research methodologies and terminology, or could possibly produce a glossary for non-researchers and host workshops teaching the nature and conduct of research.
So, although many may not have had formal training on methodologies and terminologies of research, those who are involved in research will either have at least basic research skills. If they don’t, they will definitely be so eager to learn as the work progresses or in one go via a workshop or supported background reading. We want to learn, and in doing so we know that we can make a difference. This is a point I can’t stress enough. Those with lived experience are exceptionally eager to make a difference and give back, to improve the services they have been through and to develop our understanding of mental health issues.
Researchers will gain lifelong skills by working with lived experience collaborators, it is a matter of equity that these developments are mutual and flow both ways.
Importance of lived experience in countries with low population to expert ratio - Niharika
Lived experience is a complex topic in mental health and many of us are still developing an understanding of how to better include it in programs. As someone coming from a developing economy, with a low population to expert ratio when it comes to mental health, I have seen the power of involving people with lived experience in projects.
By offering space to people with lived experience, who have often navigated complex settings, developed effective strategies, dealt with stigma and discrimination. Who have been in different situations and developed substantial knowledge in the process. Knowledge that you’d not get if you’re only listening to one kind of expert - can help open horizons for understanding of mental health solutions.
Mental health interventions in under-resourced countries can benefit from the advice of these experts by experience and can engage them in various program development including development of peer support or participatory action research. Offering compensation for their inputs can also help in economic support and upliftment in these low-resource areas and encourage more people to talk about and build solutions to tackle mental health issues in their own surroundings.
For anyone attending this conference today, who works in a low resource country or helps a low resource area develop mental health programs, please look at using this as a huge opportunity to use the considerable expertise accrued by people with lived experiences in these locations.
Centralising lived experience beyond tokenism – Jamie
One of the biggest worries that someone with lived experience has when working with researchers is that they will be restricted to tokenistic involvement. Examples of this type of involvement can include only involving the lived experience advisor in part of the project, exclusively asking for advice on how to recruit participants or limiting their advice to extremely trivial matters. Having said this, these types of involvement might still be extremely useful, and therefore they should still occur, but involvement should not be limited to these types of roles.
For many reasons it is crucial, instead, to place lived experience at the centre of research. It can help to bridge the gap between theory and experience for a more holistic and ultimately more useful approach to research. It is important for addressing context-related specificities, for devising policies that actually work and ultimately produce a greater impact in practice.
If lived experience is not used in a central role when devising and conducting research, mental health policies could be applied where it is inappropriate to do so. Simple tokenistic involvement will also harm the relationship between people with lived experience and researchers, thus making current and future collaboration even harder.
We need to break the rationalist fallacy that theories and ideas alone are enough. Instead, those with lived experience should be included as much as possible, and from as early as possible.
As has been outlined, there are unlimited possibilities for the roles of lived experience expertise within mental health research. In this space we are able to use our imagination, think differently about resource allocation and move towards a more equitable and responsive mental health research landscape. As a lived experience team, we send our thanks to the organisers of the summit for entrusting us with this conversation. We hope that this is indeed the beginning of your journey and the continuation of ours.
We will end this article with a quote from Lived Experience Consultant, Grace Gatera:
People with lived experience have a lot of contributions to make in every part of mental health research, access and delivery. We are imbued with the wisdom from our lived experience, and we are often eager to contribute past just telling our stories.
Listen to us.
Read more about co-production in research.
