IEPA 11 Day One Recap: Lived experience, honoring Larry J. Seidman and broadening the scope within the digital space.

The 11th IEPA conference began today in Boston, with 992 delegates from around the world brought together to present, discuss and debate the latest research in early intervention for mental health. A centre of learning and revolution, Boston seems an apt host city this year, as the conference continues ‘broadening the scope’ to focus on early intervention in a range of mental health contexts.

IEPA president, Peter Jones, began the day with a welcome, along with Kathy Sanders, from the Massachusetts Department of Health, while conference co-hosts Kristen Woodberry and Matcheri Keshavan welcomed everyone to their city. Without further ado, and with ‘Twitter on fire’, the conference was off and running.

In the first plenary, Edward Bullmore presented work by the Neuroscience in Psychiatry Network. Their studies of MRI of the brains of healthy young people show structural brain changes during adolescence, namely “major ‘hubs’ in the brain’s connectivity networks within its outer layer, the cerebral cortex”. They also showed how the different imaging phenotypes identified by this work can be mapped to known schizophrenia risk gene profiles. As he said, cortical changes need to be taken in context, but this is an exciting time for understanding how the brain is sculpted in adolescence.

Context was everything for Nev Jones in the second plenary. Or rather, the lack of context that’s often found in psychiatric research; something she realised when she experienced research trials from the subject end. Now a researcher herself, Nev made a compelling case for the need for researchers and clinicians to consider all layers of context regarding mental illness – not only the layers that are thought important by people with the political, funding and academic power.

Front-line service providers, people with lived experience of mental illness and family and friends are just some of the groups whose perspectives are not given as much weight when, for example, a research trial is designed. The result is not just a lack of perspective, but a real risk to the validity of the research.

So how do we broaden the perspectives of psychiatric research? Nev gave three simple starting points: diversify the decision-makers, diversify the measures and measurements used, and diversify opinions (‘don’t shy away from critics’). She also suggested that researchers could take a leaf out of other industries’ books and make user-centered design the norm.

The tech industry has promised for some time to broaden the scope of treatment for mental health. The internet, in particular, has the potential to solve problems of access to and engagement with treatment, and to help with key domains of social functioning. But is it the revolution we’re hoping for? This was the question posed by Mario Alvarez-Jimenez, one of the people at the frontline of online interventions. And his answer seemed to be ‘not quite yet, but stay tuned’.

Online interventions have been shown to work clinically, but are not taken up enthusiastically by young people. There are just too many offerings in the ‘attention economy’ of social media, and well-meaning online interventions can’t compete with commercial platforms such as Facebook. But Mario and his team at Orygen, in Melbourne, are fighting back with a ‘wellbeing economy’ and their moderated online social therapy (MOST) framework. They have developed online interventions that help improve symptoms and outcomes in young people with a range of mental health conditions – and not only that, young people like using these platforms.

While he may never conquer Facebook, Mario’s vision for an ‘enhanced’ model of care that includes both face-to-face and online therapy will certainly broaden the scope of early intervention services.

The morning finished with the presentation of the Larry J. Seidman Award for Outstanding Mentorship. Dr. Seidman, who was instrumental in bringing IEPA to Boston, sadly passed away last year. His many professional and personal qualities have been remembered fondly at the conference by numerous presenters and attendees. But it was his generosity with his time and intellect, which has shaped so many careers, that made mentorship the clear choice for an award honouring his memory. Larry’s wife, Ilene, presented the award to Larry’s good friend and colleague, Matcheri Keshavan.

After lunch, the scope broadened enormously, as the conference split into a number of symposia and oral sessions. Highlights included:

In symposium 4, presenters from Montreal, Lausanne and Melbourne examined the need for specific treatment in early intervention services for population sub-groups, including homelessness, substance use, people with personality disorder and migrants. Some unexpected findings were that personality disorders were not more prevalent among young people with FEP than in the broader community, and that people who don’t migrate because of adversity are actually more resilient in the face of mental illness than non-migrants.

Truly in the spirit of broadening the scope, symposium 8 was dedicated to early intervention in bipolar disorder (BD). Aswin Ratheesh asked whether guideline-concordant care improves outcomes for young people with BD. The results were mixed, but one clear conclusion was that better guidelines are in fact needed. Philippe Conus presented research showing that different factors predict disengagement in first-episode BD compared with FEP, including experience of childhood abuse and lack of insight during treatment. And Craig Macneil and Sue Cotton highlighted the importance of BD-specific psychological therapies, an area that is still lacking, but which they are trying to redress with the RECOVER trial.

IEPA has not only a broader scope this year, but also a broader audience, with day passes made available for the first time to people with lived experience of mental health conditions, whether themselves or through a loved one.

Although the contribution of people with lived experience has long been part of the ethos of early intervention, it’s easy for the people who use mental health services to become a little abstracted at a conference, where statistics and research ‘outcomes’ tend to be the focus. It’s great to see IEPA opened up to this group, and already the insights offered by people in the audience show how valuable it can be to diversify perspectives, as Nev Jones said right at the start.

A special evening event today, Early Intervention Partnerships with People with Lived Experience, further explored the question of how researchers and clinicians could or should partner with people with lived experience. The challenges of the peer-support role in treatment programs were discussed with clarity and passion, as was the absolute necessity of having lived experience advisory groups to guide and thereby improve research.

Elyn Saks, a researcher who also has a diagnosis of schizophrenia, then finished the evening by reading excerpts from her book The Center Cannot Hold, which described her experience of psychosis as relational, and the sometimes brutal treatment she received many years ago. Things have changed since then, but it would not hurt to keep Elyn’s words in mind: “Mental ill health involves whole people … good mental health treatment keeps people alive, but sensitive mental health treatment allows people to flourish.”

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