‘They’re able to see things that I don’t’

What is it like to live with psychosis, or Parkinson’s, or dementia, or to be autistic? The traditional approach is for an interested team of psychologists to design a study, and run it. But this is changing. People with disorders are no longer simply subjects to be studied but ‘experts by experience’, who can play key roles in the research process itself. ‘It’s about working with rather than on or for people,’ says Georgia Pavlopoulou, of UCL and the Anna Freud Centre. New academic/patient co-productions are now delivering all kinds of benefits, from unprecedented insights into complex disorders to improvements in vital services.

Overdue and open-minded

Psychosis ‘is the most ineffable experience of mental disorder’, write the authors of the first ‘co-written bottom-up review of the lived experience of psychosis’, published earlier this year in World Psychiatry. In a bid to try to really explore what it’s like, experts by experience played a major role in picking the themes for the study and in screening and discussing first-person accounts. This led the team to identify some commonalities in the trajectory of psychosis. They found that the early stages of psychosis were characterised by a sense of compromised contact with reality (as expected), but also the feeling that something important was about to happen, and a need to hide inner tumult. Later on, the core lived experiences involved a struggle to accept this inner chaos, the new self, the diagnosis and the uncertainty of the future. The team, led by Paolo Fusar-Poli, also identified what people with psychosis view as ‘recovery’: ‘an enduring journey of reconstructing the sense of personhood and re-establishing the lost bonds with others towards meaningful goals’.

Psychosis is so ‘dizzyingly alien to our usual patterns of life and so unspeakably enigmatic’, the team observes. But deep patient involvement in this research helped to illuminate it – with impacts not just for academic understanding of the disorder but approaches to treatments.

The early stages of psychosis were characterised by a sense of compromised contact with reality, but also the feeling that something important was about to happen.

In some cases, experts by experience become academic experts, too. These people can be perfectly placed to spot gaps in research, and work out how to plug them. Karen Leneh Buckle is an autistic student at the University of Manchester who chose to investigate ‘autistic inertia’ as a result of her own experiences and her observations of other autistic people. Buckle’s first paper, published last year in Frontiers in Psychology, was the first to describe this difficulty in stopping, starting and changing activities. ‘Inertia had pervasive effects on participants’ day-to-day activities and wellbeing,’ the team concluded. ‘This overdue research opens the door to many areas of further investigation to better understand autistic inertia and effective support strategies.’

Ellen Poliakoff and Emma Gowen of the division of neuroscience and experimental psychology at Manchester University are supervising Buckle’s research. ‘In my view co-produced research is characterised by open-mindedness, respect and being prepared to take unexpected directions,’ says Poliakoff. Together with an autistic collaborator, Peter Baimbridge, Poliakoff and Gowen have also created some practical guidelines for autism researchers to consider, to increase involvement, collaboration and trust between academics and the autism community. Involvement itself builds trust, says Gowen: ‘You can make sure you are working on topics that are important to them and avoid potentially offensive terms. This all helps create a friendlier and more participatory research environment.’

Authentic

Last year, a team involving researchers from UCL, the Anna Freud Centre and King’s College London launched a major new project to explore why some young people with neuroatypicalities, including Attention Deficit/Hyperactivity Disorder and autism, develop depression, and what types of support might help. As part of this project, young people with ADHD and/or autistic traits are co-developing a self-report measure of emotional regulation. Traditional questionnaires aren’t ideal, partly because they often include language that is too abstract for neurodivergent young people to understand, comments Georgia Pavlopoulou, who is working on the project. Their direct involvement is key to the creation of a questionnaire that really works for them. 

Pavlopoulou talks about the importance of ‘authentic’ co-production: ‘We need to involve people through the lifecourse of the research project, and not just as a ticking exercise’. Recently, she also worked in partnership with autistic young people to understand what helps them to sleep. This project found that, for these individuals, standard sleep hygiene recommendations weren’t ideal. Factors that made a real difference to them included spending time in ‘predictable and fun’ ways with family members before bedtime, for example. This project went full circle, Pavlopoulou explains – from first listening to autistic young people’s real-life experiences to collaborating with autistic young people in a school to understand their responses to the research, and then working with them to create resources to share the research as widely as possible among the people who would benefit from them. ‘Co-production in knowledge exchange is a great way to increase the impact of research findings,’ she adds.

Some co-produced studies have focused on disorders that can be especially hard to treat, such as bipolar affective disorder, while others are now exploring broader issues, such as alcohol use among older people. In this latter case, Newcastle University-based academic Beth Bareham trained up a group from the Glasgow-based Drink Wise Age Well programme to work as peer researchers, to collaboratively develop better services. She has since worked with some of the same group to investigate alcohol use among older people during the Covid-19 pandemic. They helped not only to recruit participants but to analyse interview transcripts. ‘They particularly helped to tease out how the pandemic was affecting mental health and drinking,’ says Bareham. ‘They’re able to see things that I don’t because of their personal experiences.’ With further training, some are now acting as co-facilitators in interviews for new work on older people with both alcohol and mental health problems. ‘They have great insight into the topic, and can really relate to our participants and explore issues in depth with them’” Bareham says.

Obstacles

Despite all the advantages, there are challenges, though, to running co-productions. And they help to explain why more research isn’t done in this way.

One obstacle is that they take longer than traditional studies. Given the current research climate, this can be a real barrier, says Gowen. She calls for change: ‘It’s important for funding bodies and research institutions, such as universities, to more explicitly value co-production and factor in the extra time and money it takes. If pressure is placed on academics to publish a high number of articles, this disincentivises co-production due to the time commitment required and at the same time drives down research quality.’

But even if patients aren’t fully involved in all stages of the design and implementation of a study, there can still be advantages to less intense collaboration. It can help to build trust and relationships, which might be needed especially among groups who felt they have long been experimented ‘on’ rather than with. And that, say Gowen and Poliakoff, can be an important first step towards fully co-produced work in the future.