The Lessons We Learn From Lived Experience Experts

How people with psychosis and their caregivers are reshaping research from the inside

Roles in research are usually clear. Researchers conduct studies, and people with health challenges participate in them. However, in the PRECOGNITION project, the boundaries of those roles blur into a collaborative partnership.

In a Zoom call, two opposite worlds meet. On one side of the screen sits David. He is the father of a daughter with psychosis. On the other side of the screen sits André Marquand. He is a computational neuroscientist involved in a large study on psychoses.

They both have the same question:

“What can people with lived experience contribute to scientific research?”

The moment was captured by filmmaker Tim Wiesner, making a documentary about the project.

In the PRECOGNITION project, researchers from Nijmegen, Oslo, and London work together with people who have experienced psychosis up close. Those are people who have psychosis themselves and their caregivers. These lived experience experts are not just participants in their research, instead, they are co-researchers. Their role goes beyond participation. They help shape research questions, discuss findings with researchers, interpret data, and even co-author academic papers. In short, they help design the research itself.

Predicting psychosis

The PRECOGNITION project aims to better understand how psychosis develops. Psychosis is a complex condition where people temporarily lose touch with reality. Some people hear, see, or believe things that aren’t really there.

Psychosis looks different for everyone. Some individuals experience only one episode, while others have many. Symptoms vary widely, making it difficult for doctors to predict how the condition will progress. This uncertainty can be stressful for people with psychosis and their families.

“That’s why it’s important to detect early signs,” says Marquand. “The sooner you know which direction things are heading, the sooner you can intervene.”

In the project, researchers monitor changes in cognitive functions such as memory, attention, and processing speed. Often, we can already see changes in these domains before a psychotic episode occurs. Using large datasets, statistical models, and artificial intelligence, the project aims to identify these early signals.

Marquand compares it to a growth chart for children: “If a five-year-old weighs far below what we expect, we know something might be off.” Similarly, the team is developing a “brain growth chart” to better predict the course of psychosis.

More than numbers

Numbers and models however, don’t tell the complete story. Researcher Charlotte Fraza also notes this.

In her daily tasks, she analyses big data sets and statistical patterns. Normally, she rarely has direct contact with people who have psychosis themselves. That changed in this project.

“When you talk to people that have experienced psychoses themselves, all of a sudden, the data turns into something meaningful,” she says. “A lower score on a memory test is not just a number anymore. It can mean that someone had difficulties following a conversation, or is forgetful”.

Lived experience expert David shows us a photo album with his daughter in the documentary “The Missing Piece”. From: [Tim Wiesner, The Missing Piece]

These conversations revealed that people who have psychosis often view their condition differently than researchers do. Traditional psychiatric research focuses on symptoms, while lived experience experts care more about daily functioning.

“Can I go back to work?”

“Can I maintain relationships?”

“How do I rebuild my life?”

“Symptoms alone don’t tell the full story,” says Marquand. “For many people, the real issue is functioning in daily life.” Cognitive challenges like difficulties with concentration, memory, or planning often have the greatest impact on everyday life, yet they are sometimes overlooked in research.

Besides this, another issue emerged. Those who are most affected by psychosis are often the least visible in research. This is because it is not really possible to conduct interviews or tests while people are experiencing a psychotic episode. As a result, the voices of those people often get lost in research. This is why the PRECOGNITION project also talks to caregivers to ensure that these perspectives are included.

By involving lived experience experts and their caregivers, the focus of research shifts. Instead of focusing solely on reducing symptoms, studies now also explore daily functioning and recovery. At the same time, researchers are finding ways to better include people who are often left out, making the research more inclusive, meaningful, and relevant.

Research in progress

Collaboration with lived experience experts is still relatively new, but more and more researchers are actively involving these people in their studies. For filmmaker Tim Wiesner, this is an important evolution in how research is approached. His documentary seeks to show that research is more than numbers.

“There’s a lot of emotion behind the work,” he says. “There are people who are deeply passionate about what they do. Ultimately, both lived experience experts and researchers are working toward the same goal.”

“You often think about formulas and statistics when thinking about research,” he says. However, the things that matter the most to me are the conversations between researchers and lived experience experts.”

The PRECOGNITION project is still ongoing but the documentary already gives a unique glimpse behind the scenes. It shows that research can be messy, uncertain, and full of unanswered questions.

Working with lived experience experts is still a learning process. Many researchers are still trying to figure out how best to integrate these perspectives. On the other hand, lived experience experts are also still uncertain about how to contribute to research. Besides, not all research needs lived experience experts. For example, cell biology research doesn’t need that input.

The PRECOGNITION project shows that there is a shift. Something new is emerging. Researchers get new perspectives on their data, and lived experience experts actively participate in research about their lives.

Perhaps that is the most important outcome. Not just predicting psychosis, but rethinking how research is conducted. In collaboration, with mutual understanding and respect.

Experience is not just a story.

It is knowledge.

Published on The Erlenmeyer Collective