We reflect on the importance of experts by experience being named as authors, and why they are so often absent from peer reviewed journal articles.
A new special edition reporting findings from the Viewpoint survey was published in July. It includes a paper on our qualitative research into mental health discrimination experiences which was co-authored with four peer researchers.
We reflect on the importance of experts by experience being named as authors, and why they are so often absent from peer reviewed journal articles.
Research is meant to be talked about
Research is not done for its own sake. Research is meant to be talked about. It should become part of ‘what is known’ about a subject, used by practitioners, policy makers, commissioners and all of us.
People with lived experience of mental health problems need to be heard at this stage – indeed, their voice should be as loud as anyone’s. But this voice is often not present in some of the important places where research is discussed. In particular, in research journals.
Research journals are only one way of getting research findings out into the wider world, but they are an important one. The idea of ‘peer review’ is central to this.
Anyone can do research and make claims about what they’ve found. To check that these claims are credible and trustworthy, research published in journals is carefully reviewed by experts in the subject. They look at how the research was done, whether it takes into account what is already known, and whether it reports what it found fairly and accurately.
This system is not perfect, but it helps us to speak with confidence when we say there is evidence for something. So, when policy makers and other researchers look at what is already known about a topic they often focus on ‘peer reviewed’ research. And yet the people who are shaping this evidence with their lived experience are often not visible in this literature.
What research misses without lived experience
This is a problem because it means that people who bring their lived experience to studies have less chance to influence the wider debate, to write about what they think is important to them, and to have their contribution recognised.
It may limit career opportunities for new peer researchers, since a publication record is important in developing research careers. It may also mean that the contribution of experts by experience throughout the study is less prominent than it should be and does less to promote the benefits of involvement to other researchers.
Our experience in the Viewpoint survey and other studies highlights some of the challenges that may prevent peer researchers from getting involved in writing up research for journals.
The process itself raises practical challenges. Writing journal papers often continues after funding has ended. While this may not be a problem for people in permanent research positions, for those who are employed on a particular project it can be harder to stay involved at this stage.
The process is also often a long one. The time between completing a project and seeing a paper in print may take more than a year.
Over this time, there are often changes to the paper in response to reviewers’ comments. If a paper is rejected by one journal, it may be completely re-written to meet the requirements of another. At each stage, the wider team may feel more and more distant from the paper and have less opportunity to spend time on it.
The issues around writing journal articles collaboratively
In the Viewpoint survey the interviews were conducted by four people with lived experience of mental health problems, and the analysis was carried out as a group which included the interviewers and colleagues from the McPin Foundation. However, writing as a team was more difficult.
Journals have a particular style and structure which can feel unfamiliar and restrictive to people who have not written in this way before. In general (though with some exceptions in particular fields of study, such as ethnography) this style does not lend itself to personal reflection or being explicit about researchers’ personal experiences.
Finally, writing is often a very personal thing. While a group may all contribute to the findings, it normally falls to one person to find the words. Writing as a committee is never an easy process, either for the person doing most of the writing, or for those who are changing it.
How can we get experts by experience involved?
So, how can experts by experience be involved more at the writing stage? First, by recognising that writing for peer review publication is a skill that needs to be developed.
All new researchers learn to write for journals by doing it, usually with guidance from senior colleagues. It is important that those who bring their lived experience to studies also have these development opportunities so that they become more visible and more influential in published research.
Second, this stage of the research needs to be properly resourced so that those who are not in a full-time research role can continue to work on the writing after the project itself is completed.
And finally, journal editors and reviewers need to recognise the important contribution brought by people with lived experience and allow their perspective to be given appropriate prominence in their journals.