Mark Brown introduces a new project asking ‘How does it feel to read a bit of research that draws conclusions, offers explanations or provides recommendations for how the rest of the world should understand someone like you?’
While there has been much discussion over the last three decades about what it means to be a participant in research, or to be a lived experience researcher; there has been less discussion about what it means to belong to the broad category of those being researched.
NSUN, with The Mental Elf, are launching a new small project to explore just that experience. We’re looking for people with lived experience of mental ill-health, distress and trauma to summarise and respond to recently published mental health research and to explore what that research means from the perspective of someone who lives with the things researchers research or the conclusions they arrive at.
Where is the lived experience response to research?
It used to be really simple. Academics and researchers and decision makers read research papers, or at the very minimum recommendations created from them, and the rest of us might get to read a very mangled version of those conclusions if they were picked up by a newspaper or television programme. We’d all get to hear ‘scientists have found’ or ‘researchers have discovered’ followed by something that presented each new finding or study as trumping all others. Researchers researched and we just got on with trying to survive. While the arrival of the web has done a lot to make access to this research wider, many research papers are still published in journals that are behind academic paywalls.
Research is one of the ways that society tries to understand the world. Every year thousands of research papers and articles are published related to mental ill-health, distress and trauma.
To belong to a group of people about whom research is carried out, or to experience a challenge, difficulty or difference about which research draws conclusions is a different experience to being someone who has no direct experience of the research topic at hand.
Until relatively recently, the people who live with mental ill-health and its impacts have been considered to be much of an audience for these end products of research work. When you live with a set of experiences related to your mental health, reading research about the conditions, circumstances or challenges that you live with can be something that stirs up a variety of feelings and thoughts. It can be a profoundly odd experience, reading statistics and conclusions about something that happens to you or people like you.
I spent a lot of time live tweeting academic mental health research conferences for The Mental Elf, where researchers present their findings and have often had experiences where I’ve thought ‘holy heck, this research is about something I experience’ and then have had a number of mixed experiences. As I wrote once:
“A part of me wants to shout out a protest, to challenge these professionals, to ask what right they have to stand in judgement of the brains of others; to demand they put away their spotters guides and field manuals and to stop reducing people to proteins and synapses and hormones… Listening to the lectures, with their statistics and trials and recommendations and confident mastery of knowledge I feel as if I am being called out, being named, being cast out again, being robbed of a uniqueness, like as a child first discovering that there are other people with whom they share a name.”
Increasingly there is a movement to make lived experience visible as part of the process of research. Sometimes this is through working with individuals and groups to set the priorities for what questions need to be answered. Sometimes it is through involving those with direct lived experience within the research process through consultation, steering groups or advisory panels. Sometimes it is through making visible or actively recruiting members of the research team who are open about their lived experience.
What has been less discussed is how it feels as a person with lived experience to consume such research, and to draw conclusions based on how the conclusions of that research might affect people who live with the things being researched.
And that’s where you come in.
The project
NSUN is looking to recruit a small cohort of individuals to take part as reviewers of mental health research papers (one blog each) for The Mental Elf, a service which publishes blogs summarising mental health research papers.
Mental Elf provides a template to writers to suggest the structure for each blog. Mental Elf encourages writers to include critique and discussion of the research which is being summarised. NSUN would like the individuals taking part in this small cohort to bring a reflective perspective to writing these blogs that explores broader issues around mental health research and the implications of its findings.
The premise for these blogs will be: ‘what does this research mean for the lives of those who would be directly affected by its conclusions?’.
We really want to bring a lived experience perspective to these blogs, discussing in depth the implications of the research and the meaning of the research in the context of the broader reality in which those who experience mental ill-health, trauma and distress live.
Readers of The Mental Elf tend to be people who want to get up to speed with the most recent research and who are open to thinking about what that research means in a wider context. The Mental Elf has a template for summarising research, including a section for discussion or thoughts about the implications of the research findings.
What NSUN and The Mental Elf want to add via this project is a distinct lived experience response in the discussion of what the research means to the lives of people.
Support for bloggers will be provided by me, Mark Brown (@markoneinfour), who’ll be there throughout the process of selecting the paper to review, writing up the blog itself, and to provide support once the blog is published and publicised on social media.
How to get involved
If you are interested in being one of the reviewers for the project, please contact NSUN at info@nsun.org.uk by Friday 25th November 2022 with answers to these three questions:
- Why would you like to take part in this project? Please limit this answer to 100-300 words.
- We would like to offer this support to people who have not previously been published in this way before. Have you previously had any research, or research reviews, published anywhere (outside of a personal blog, for example)?
- Please could you let us know where you are based in the UK?
We will be paying reviewers £300 each for their time on the project.