How lived experience shaped this 6-year mental health study

The NEON trials

The Narrative Experiences Online (NEON) project recently came to an end and, considering it was a six-year study, there was plenty of opportunity for lived experience input.

Led from the Institute of Mental Health at the University of Nottingham, NEON looked at whether reading, watching or listening to other people’s stories of personal recovery online can improve quality of life for people with psychosis and other mental health conditions. It also aimed to find out which elements of other people’s stories are most helpful.

The trial culminated in a collection of online narratives about mental health recovery, which trial participants could access.

Programme Coordinator Stefan Rennick Egglestone shared how the study team approached the lived experience involvement for the project, and the difference it made.

Democratic decision-making in research

Even before the study had officially begun the team had a 10-person Lived Experience Advisory Panel (LEAP), with an independent chair from McPin, who met three times a year.

“We had no cancellations, there was always a meeting,” says Stefan. “It was always packed with content, so there was always something to discuss.”

Meetings earlier on in the project was more formally structured to provide recommendations to the study team on specific questions.

“So for example, as we applied for the kind of approvals that you always need to run a study in a trial, we were uncertain about how to ethically work with narratives where people’s identity was clearly present.

“There were competing challenges around, for example, someone’s identity being closely tied to their narrative. Members of the public talked to us about other studies where they’d been asked for a mental health narrative and their identity had been removed from the narrative, telling us that that felt like a form of abuse.”

“This was in contrast to others feeling that their identity should be in the narrative, but perhaps not truly feeling informed about what might happen to the narrative once it was integrated into an online intervention.”

Based on the a LEAP recommendation, the NEON Collection always required a username and password to access. This protected authors, by stopping search engines like Google extracting content from their stories.

“So we took issues like that to our panel of public members, asked for recommendations, and tried to come to recommendations by consensus wherever we could,” says Stefan, “but sometimes held votes where there was disagreement in the panel.”

For the most part, says Stefan, the team followed the LEAP recommendations – in the case of narrator identities, for example, the panel recommended that the narrator should choose how their identity appears, and the team followed that recommendation.

“And actually, receiving that recommendation from members of the public probably helped us navigate through the process of receiving approvals for a study because, for example, ethics committees do respect the judgment of members of the public.”

Open and transparent communication

When there were recommendations the team couldn’t follow, they tried to be open and transparent about why, says Stefan.

“We worked quite closely with that panel through the six years of the study.

“For the research roles, and certainly for the ones based at the University of Nottingham – apart from a technical statistical role – in almost every job we included personal experience of mental health problems as a desirable criteria at least.”

That meant that many of the members of the research team, which met every week to make study decisions, brought their own personal experiences of mental health issues, says Stefan.

“Those personal experiences certainly fed into many of those decisions, and influenced the whole language around the study.

“So, for example, in many cases we avoid words such as ‘disorder’ that many of us on the research team dislike. And that came about because of discussions in the study team, attended by people with personal experience of mental health problems.”

As a team, the researchers and LEAP needed to keep themselves safe as well, so together they developed procedures to support this.

“For example, if you started to review a narrative and found it distressing, you had the absolute right to stop and not to require an explanation for why you were stopping. Because the reason, the narrative distress, may be so private to you that you may not want to describe it.”

“95% of decisions were made by the panel”

To help make sure lived experience involvement was meaningful the team also created subgroups related to specific issues about the study. Members were a mixture of the LEAP and research team.

“We had a collection steering group which had six members – two researchers, and four public members – that took the vast majority of decisions about the collection of recovery narratives,” says Stefan, “such as whether any criteria should be changed, or whether individual narratives should be included or excluded, if there was any uncertainty about that.”

There were a few decisions that they couldn’t make – for example, about narratives describing techniques for self-harm in detail, which fell to the Chief Investigator as he had principal responsibility for safety – but the majority were made by the steering group.

“I’d say 95% of the decisions about our narrative collection were made by the panel that had public and research team members,” says Stefan.

The other subgroup panel was called the ‘intervention development group’, again a mix of LEAP and research team, which developed the web application that gave people access to the narratives.

The study proposals had input from LEAP members, who had also advised the Chief Investigator’s previous study.

“There are decisions that might not have been made without that input,” says Stefan.

Creating meaningful lived experience involvement

When it comes to meaningful lived experience involvement, it starts with having the right resources available, says Stefan – in particular paying people for their time and expertise.

“I think somewhere around £70,000-80,000 was included for public involvement work and we’ve pretty much spent all of that budget over the six years. Fundamentally that budget was what allowed us to do work to that level of detail.”

He says what’s interesting is that, when proposing the study, none of the 10 reviewers contested the scale of resources that were included.

“So it wasn’t at all problematic in the context of an application that was slightly over £2 million to include that level of resources.”

Stefan has been supporting public involvement work since 2008, so also knew the importance of allowing for enough time for meetings to feel comfortable for everyone involved.

“An amount of content which you might cover in two hours in a meeting attended purely by people who are ‘professional’ researchers – by which I mean people who have some history of being paid to do research – may need four or five hours to make sure that all public members are comfortable.”

Part of that is making sure the topic’s accessible, he says, and part is relationship building.

“So it’s not just about explaining the topic better – that does take some time and needs doing – but it’s about making sure that there’s a relationship between members of the public and researchers as well.”

Making research accessible

Another important part of lived experience involvement is helping make research less opaque to the public, says Stefan.

“So a metaphor that I’ll often talk about in public meetings is that almost all of us would’ve seen a builder working on a building site at some point.

“You would have some idea about what people in the building profession do, because we’ve seen them working on building sites or in our homes, but most people would’ve never seen the inner workings of research. Or what they would’ve seen is things like researchers talking about research on news programs, for example.”

Often the way that research is presented in those kind of outlets is misleading or lacking in detail, he says.

“So something I’ve learned, even more than I realized before, is that it’s really important in meetings with public members to try and explain what’s going on research-wise.

“For example, a six-month gap between discussing findings for a paper and submitting it is quite normal in research, because you need the time to perfect the paper and to get feedback from other people who might be on tight timescales.

“But to a member of the public there’s a risk that a six-month timescale can seem very slow. And of course it’s very easy for people to infer from that that researchers are not paying proper attention to it or that something’s going wrong.”

This meant it was important to keep the LEAP members informed – from timescales to what needed external approval.

“And that if we’re not engaging with a topic, it’s not that we don’t want to do it or don’t care about it,” says Stefan, “it’s just that legally we often need the approval of something like an ethics committee, so we just can’t move as quickly as people may expect.”

From LEAP member to researcher

Ultimately one of the things Stefan is most proud of in NEON is the fact that several LEAP members have moved on to jobs where they’re much more engaged in research – including a few now actively employed as researchers.

“And of course people brought knowledge and experience already,” he says, “but hopefully those six years of engagement in a research project perhaps gave a bit of a boost to their original experience, that made some small contribution towards them making that step into a more active research engagement.

“That’s the ideal for me, is that someone can join a public advisory panel, become engaged in research, realize it’s something they’re interested in, and there’s a route all the way through to becoming a professional researcher.”