14th December 2023 Blog

Elevating lived experience voices in academia

public involvement •

Publishing is a key part of the academic landscape, but what are we doing to elevate lived experience voices? Vanessa Pinfold speaks on new work McPin is doing with The Lancet Psychiatry.

The scary world of academic publishing

Academic publishing is a key infrastructure feature of academia; articles in peer review journals which have impact factors that are integral with the Research Excellence Framework providing universities with a research ranking.

Ever since I started as a researcher many years ago, I have found writing articles for peer review journals a very challenging process. The fear of rejection is one of them, but also the process of preparing manuscripts can be a labour of love and exhausting. The varied quality of the reviews received can be tricky to negotiate and you might not always agree with the feedback provided!

The goal to get published might mean some compromising in order to try to ‘please’ all the reviewers and editor. Plus the cost of doing so as a charity is now a significant barrier for us at McPin. We always publish as open access and that comes with a price tag of over £2000 per article.

Why academic publishing is important

Academic publishing is an important skill to hone for mental health researchers. We recently audited how many articles our staff at McPin had been involved in during the first 10 years of the charity: 100, with 15 as lead authors.

Part of our motivation to publish is to get peer research and patient and public involvement (PPI) methodologies into the literature and cited by other authors. We want to support the development of lived experience research as an academic field, in its own right.

This goal has been helped by journals such as Research Engagement and Involvement which describes itself as ‘an interdisciplinary, health and social care journal focussing on patient and wider involvement and engagement in research, at all stages. The journal is co-produced by all key stakeholders, including patients, academics, policy makers and service users’.  

To develop the skills and careers of the PPI workforce, and in particular peer researchers, McPin is keen to support more of our staff and lived experience advisors to publish work, and to do so in a variety of prestigious journals.

Developing relationships with people who lead this sector has become important for us – but it is a disparate group with many journal editors working in their spare time, as few journals have paid staff teams.

That is another challenge – much of academic publishing is done on good will and is unpaid, which drives inequality and creates a problem for those stakeholders less able to volunteer their labour for free. So, although academic publishing is fraught with problems, it is a central structure in the mental health research ecosystem. It’s one we need to engage with but also evolve.

In many papers...the work of PPI contributors is hidden or absent. I would like to see more systematic reporting in journals of how lived experience shapes and contributes to a study.

Alex Kenny, Senior Public Involvement Officer

Guidance on reporting PPI

Despite teams like those at McPin developing guidance around public involvement (see here), and journal articles including research on people’s experiences of virtual reality for addressing social phobia and psychosis (see gameChange), the reporting of PPI is varied, even haphazard (see Jones et al review 2021).

There are no formal requirements to include PPI within manuscripts in most academic publishing – although there is guidance, like GRIPP2.

At McPin we started to think that maybe there should be, and began to enquire with journal editors what might be possible. Our research led us to some innovative practices. For example, Health Expectations requires all publishing teams to include a PPI contributors statement in the abstract.

The Health Expectations guidance states:

Include a paragraph at the end of the abstract titled “Patient or Public Contribution” which should contain details of how patients, service users, care-givers, people with lived experience or members of the public were involved in your study (this may be design or conduct of study, analysis or interpretation of the data) or in preparation of your manuscript.

If such details are not necessary or don’t apply to your work, please state why. NOTE: Your paper will be returned to you if this section is not included (and must include a statement to explain why it is not appropriate for the manuscript if applicable).

We found it is possible and that some journals have set their own requirements. Others told us it would be tricky as the request made sense but the mechanics of getting change in practice was complicated.

There was acknowledgement that internationally resource-poor settings are not funded to do community engagement or involvement work and countries are at different stages of integrating PPI in research.

We feel the value of moving forwards with standardised PPI reporting is:

  • Firstly, it will be easier to audit and report on PPI practices across published studies, which will help develop practice and share learning;
  • Secondly, it will encourage all teams to reflect and plan their PPI differently if they have to always report it;
  • Thirdly, it raises the profile of PPI to funders and others, and further validates PPI practices, including for lived experience researchers and advisors.

So, would any journals be interested in changes to practice to ensure more consistent and transparent reporting of PPI?

Working with Lancet Psychiatry

We’ve been working with Lancet Psychiatry for a few years now, supporting a lived experience peer review panel.

We approached the journal about PPI reporting and were met with positivity and action. They immediately took the issue and have run with setting up a pilot.

We are very grateful to Sophia, Joan and Dustin for putting this in place and working with the lived experience peer review panel to do so, in particular Cassie, Jessica, Bibi and Alex.

A lived experience perspective

Alex Kenny, a Senior Public Involvement in Research Officer at McPin, says:

“Lived experience involvement in research is important because it opens up academic studies to a broader perspective. At the same time research that centres lived experience tends to be more focussed on solving the challenges faced by people with mental health issues.

I am part of the Lancet Psychiatry lived experience peer review panel. During the process of working with publishers, the lived experience reviewer, who is oppressed by the system, is given a voice and becomes an advocate for positive change. They are given the opportunity to challenge stigma and ensure that journal articles are written in a respectful way before they are published.

This new piece of work is an opportunity to shape what information authors are required to provide us – increasing reporting transparency and validating PPI as a key requirement in mental health research.

I also work as a PPI coordinator on several studies, and I have seen first-hand how involving groups of people with relevant lived experience can make a huge difference to research.

When I have been asked to contribute to papers as an author, I have tried to make sure the description of PPI is clear like in the gameChange work and Feeling Safe, but in many of the papers I read, the work of PPI contributors is hidden or absent.

I would like to see more systematic reporting in journals of how lived experience shapes and contributes to a study. Where PPI is absent, noting that openly is helpful.  We know it is not always possible to do in resource limited settings but tracking this over time might help change that across the globe.”

The pilot starts January 2024 and you can read more about the work here (page 8, The Lancet Psychiatry, Reporting Lived Experience Work).

If any other journals are interested in working with us on the reporting of PPI in studies – please get in touch on [email protected].