The Lancet Psychiatry, a scientific journal respected globally which publishes peer reviewed research, has announced that moving forward, it will be requesting that authors provide information on if, and how, people with lived experience of mental illnesses were involved in the shaping of studies.

Studies that did not include anyone with lived experience of mental illness in the design of the study, shaping of the questions, delivering the research or interpreting and writing up the findings will still be able to be published in the Lancet, but will now have to acknowledge the lack of Patient or Public Engagement and Involvement (PPIE) as a limitation of their work.

In the policy announcement released yesterday the journal said:

“Lived experience perspectives are important for all research related to physical and mental health, helping to set priorities to ensure that the needs of people with particular conditions are being met adequately. They are perhaps especially important in mental health research, where biomarkers are often not the most relevant measure of conditions that by their nature affect the experience of self, mood, thought, distress, and interpersonal connection. Psychiatry has an uncomfortable history of ethical transgressions and damaging power dynamics in which people have been coerced, experimented on, and targeted by eugenic practices, and coercive practices continue today; this history heightens the urgency of listening to people’s experiences connected to mental health or ill health and to redressing the balance of power in the creation of knowledge, health-care practices, and policy.”

The Lancet itself has been working with the McPin Foundation to establish a panel of Lived Experience reviewers and plans to expand capacity by recruiting more members of the public and providing them with training.

MQ Mental Health Research has long championed PPIE in our research work. In fact ALL of MQ’s research is commissioned, designed and delivered with experiential advisors at every stage.

“We fully believe that lived experience has to be at the heart of all mental health research. We shouldn’t be performing research ON people. We should be delivering research WITH the people most impacted,” says Lea Milligan, CEO of MQ Mental Health Research. “We are very pleased to see this announcement from the Lancet Psychiatry today, and hope to see other journals following suit.”

Meaningful involvement

Involving people with lived experience of mental illnesses in research is sometimes more complicated than you may think. Over the last 10 years, MQ has worked to provide training and support to researchers so that they can ensure that not only are they working with lived experience partners effectively and meaningfully, but that they are also doing this carefully and respectfully.

For many people, the idea of working with professors, scientists and experts at universities can be daunting. Especially for people whose mental health condition may have effected their education or ability to work.

Avoiding tokenism, ensuring support is provided should discussing certain subjects become upsetting, and ensuring that contributors time is fairly compensated are all important elements of effective PPIE in research.

Following MQ’s support and by collaborating meaningfully with people with lived experience,  96% of MQ researchers who incorporated PPIE into their studies said it improved their work and 92% said they would include PPIE in future research.

Professor Louise Arseneault, who led the recent Global Londitudinal Datasets project at Kings College University said:

“We’ve been so lucky to be able to work with MQ who took on the challenge of making sure lived experience experts were part of this project throughout. The aim of the project was really to identify those data sets so I was kind of going well how can lived experience be involved in this? MQ really changed my vision about about lived experience involvement in the project.”

MQ Ambassador and researcher James Downs has been involved in many research projects over the years, including the ground-breaking Gone Too Soon Roadmap which he discusses here.

“People with serious mental illness die too young. When I hear about this I think “well this is going to be me!” which is a horrible, sad and very bleak realisation. Certainly, many of my friends have died from severe mental illness and related conditions.” Says James in this blog.

“But it makes it even more important that I am involved in contributing my lived experience, my expertise in research from a lived experience point of view. It’s a way I can respond to how sad and angry I am because a lot of this is preventable. So rather than be engulfed in fear or despair, to do something constructive about it, to use my experience to create something different to change things.”

But what does ‘involved in research’ actually mean?

One of the most important ways people with lived experience can contribute to research is by ensuring that the experts are asking the right questions. There is little point in spending large sums of money on expensive laboratories and equipment if the work being done won’t ever actually help anyone. Priority setting for research topics and choosing what research to fund are important decisions.

Designing studies is also an important stage for PPIE. Understanding how studies can be carried out in a respectful way that won’t exacerbate symptoms or cause offence is especially nuanced work.

Finally, interpreting and writing up results can bring important perspectives that are otherwise hidden.

“We at MQ are committed to addressing the barriers preventing those with lived experience and diverse points of view to have meaningful influence in research,” says Mariana Bolivar, Programme Lead at MQ. 

“This means working with our partners and Lived Experience Experts to design relevant incentives to participate in research, consider digital inequalities, improve translational efforts, avoid tokenism and fight stigma”

You can find out more about how MQ has involved PPIE in our research here, or learn more about MQ’s own Lived Experience Network here.