How to Change the World with Lived Experience
There’s been a lot of talk about how we can use our lived experience with all sorts of different matters, to inform new helpful research and to make a positive difference in the lives
of others. But where do you even start? Most days I can’t even find the energy to put away the pile of washing that’s building in the corner of my room for weeks. Have you ever wanted to help change the world, but just don’t know how you could ever possibly do it?
Research is a very important part of coming up with helpful ideas and discovering new ways to improve people’s lives. By investigating different sources and running experiments, the findings can tell us a lot about what works, what doesn’t work, and fill gaps in our knowledge that can take us forward towards providing the best care we possibly can to others. We have a lot to thank for where good research has lead us today!
Government policy organisations and intervention developers like scientific research to be as objective as possible. This means that any particular perspectives, biases, values, or personal interests do not influence the results of the research. According to this logic, we get an answer that is the most truthful and close to actual fact as can possibly be, which will be the most effective in solving the problem at hand. Right?
Traditional research can sometimes be disadvantaged by its strict methodology. Here’s an example: back in the day, clinicians believed that the best way to treat Obsessive Compulsive Disorder (OCD) was by using a technique called “thought-stopping”. The idea was simple – every time a negative thought popped up, the client was made to say “STOP!” out loud or snap themselves with a rubber band. This approach was based on an age-old behaviour theory called conditioning, which has been shown time and time again to explain pretty well one way in which people learn. So, using this research, people assumed that this technique would help people get better.
Actually, it turned out that their symptoms got WORSE. These days, we know why – when someone tries to suppress their negative thoughts, they start to think it more and more and with greater intensity (1). It would be like if I told you:
DON’T THINK OF A PINK ELEPHANT.
What are you thinking of now?
STOP THINKING ABOUT THE PINK ELEPHANT!
Is it going away or getting stronger?
Today, effective treatments for OCD do the opposite of “thought-stopping”. New interventions ask people to lean in to their negative thoughts, so they learn that their thoughts are not really dangerous and don’t need to be “stopped” or suppressed.
Mental health research is now moving away from these traditional methods where participants are seen as subjects in a study (4). There is much more of an emphasis on the active involvement of people who have lived experience of the condition or difficulty (whether that be undiagnosed but still experiencing some of the symptoms, through family or friends, or a clinical diagnosis of any kind) in the design and implementation of the interventions that they may be using in the future. “Thought-stopping” came about because professionals were too focused on being scientifically accurate instead of hearing about why
these people were struggling with their thoughts in the first place.
This type of research goes by many names – lived experience research, co-design, humanisation, peer-led research, and participatory action research, just to name a few. The premise is the same: people with lived experience are best placed to identify existing gaps in current services and how their needs may best be met (2). So in co-design, the people are the ones who determine what the existing issues they are facing are, and what they want to change (4). This grassroots approach to the design of research and interventions means that by incorporating the person’s feelings, thoughts, and views into the research process, without any manipulation from the researcher, then the ultimate results of the research are more inclusive, relevant, and effective (2).
“A wonderful way to connect with like-minded souls in a geographical area. A joy to connect with people who want to work with together to make things happen. A new chapter in the shift of power dynamics around mental health.” - A anonymous participant of lived experience research
Co-design can look like many things – being part of an advisory group, advocating for social change, participating in research interviews, education, and support roles (8).
Some of the benefits to people with lived experiences’ active involvement in the research process can be:
Feeling heard and empowered to make social change (3)
Learning new skills (4)
Give purpose to the difficulties that feel so controlling (6)
Make meaningful decisions (5)
Emotional relief from the shame and power of keeping a secret (6)
Co-design is also a two-way street! Researchers also benefit from:
New and fresh insights into their work (3)
Greater connection with the people who are impacted by their research (5)
Provides an effective way to begin to solve problems of practice rather than policy (5)
Allow people to tell their story to a caring person who will listen (6)
Enhances the power and accuracy of findings (7)
Heidi Tweedie is a Peer Researcher for the Mental Health Foundation. “Peer led research is an undervalued approach,” she writes. “I hope our work in the Collective will demonstrate a more effective and ‘human’ way of carrying out research by collecting and exploring data through a qualitative and personal approach. Personally, the Collective has raised my self-esteem and shown me – as someone whose academic career halted due to mental illness and learning difficulties – that research is something everyone can be involved in. It's not all data analysis using dry graphs and models, but about real people's lives and qualitative data that we can all connect to and feel inspired by.”
With a co-design approach to research that encourages collaboration with people with lived experience, the diverse knowledge, skills, and expertise that researchers and participants bring together ultimately enhances the design and delivery of effective mental health services that can truly change the world.
Are you interested in using your lived experience to change the world? The WIRED Project is a research project funded by the Million Minds Mental Health Research Mission that aims to provide more effective, relevant, targeted care to people with disordered eating. If you are aged 18-35 and would like to share your story with us, we would love to have a conversation with you. You can click here to schedule a Zoom chat with us where we can talk about your experiences and what you’d like to see from future eating disorder related resources. We’re here to listen. Alternatively, you can also do a quick survey here!
If you work with people with disordered eating and would like to contribute your experiences and thoughts to the project, we'd be overjoyed to hear from you too. You can also schedule a conversation with us over Zoom here, or complete a survey here if you're busy.
My name is Tahlia and I'm holding Zoom conversations as part of the WIRED Project team's research. As someone with lived experience with body image difficulties and disordered eating, I'm passionate about ending the stigma surrounding eating disorders and finding workable ways to help us become more self-compassionate, contented, and flourishing in our lives.
3 Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). A Systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient, 7(1), 387-395.
7 Smith, E., Ross, F., Donovan, S., Manthorpe, J., Bearley, S., Sitzia, J., & Beresford, P. (2008). Service user involvement in nursing, midwifery and health visiting research: A review of evidence and practice. International Journal of Nursing Studies, 45(1), 298-315.
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