Reflection and learnings on engaging people with lived experience
One thing I knew before this project was that, lived experience perspectives within research are incredibly important and valued.
Few months ago, I got the opportunity to become a research team member in a study to detect the combination(s) of ‘ingredients’ that are associated with a lower risk to depression across adolescence and young adulthood (ages 13 to 18 years). Within this project, so far, I have used my own lived experience to interpret the findings of the data, help with the design of the statistical analyses and co-produce a website to disseminate the findings.
About the data
The data used within this study is collected from 15,247 pregnant women that reside in Avon, UK and the 14,775 children that were born. During this time span, information regarding the causes of development, health and disease were collected. From the data, we conducted our own analysis to track the timeline of depression through an individual’s adolescence and young adulthood – including a group of individuals that showed to have high levels of depression.
Being a research team member, allowed me to not only share my perspectives and interpretations of the data as a young person, but to also help to create more valuable research by having a lived experience perspective. Below I look at why I wanted to get involved, how I have been involved in the project, and the importance of lived experience.
Why did I want to be involved?
The main reason I decided to be involved in this research was due to my own passion to inject the lived experience into mental health clinical and academic research. This project allowed me to not only bring awareness and inject a lived experience perspective to a dataset, but to start to put the steps in place to start my career in Social Research.
Throughout this process, I have learnt how research proposals are written, along with being able to analyse results and interpret them with a team of researchers – which for me will be invaluable experience for my career. The level of involvement within the project has made me feel both proud but also excited for the future of the research. Being so heavily involved throughout the research, means I feel that the young person’s voice was distinctly heard throughout the project and will only strengthen the results that are found throughout the project.
How I have been involved in the project
As an employed member of the research team, I attended the same meetings as my academic counterparts. I was also given the title of being the ‘Lived Experience Involvement Lead’ for this research project. Alongside this, I also met with the Lead Applicant of the project weekly (either via Zoom or on the University of Birmingham campus) to discuss my tasks for each week. Throughout my time on the project, I have:
- Used my lived experience to make predictions on the co-existing ‘ingredients’ to suggest what ‘ingredients’ are likely to correlate together and impact depression levels.
- Used my lived experience to interpret the results from the data and provide analysis from a young person’s perspective as to why the data has shown those results.
- Collaborated on creating blog posts for the research project.
- Collaborated and assist on the creation of a website to disseminate the research findings to the general public.
Importance of Lived Experience
One thing I knew before this project was that, lived experience perspectives within research are incredibly important and valued. Having people with real life lived experience as part of the project helps to make sure that the research results are held with a higher degree of validity.
Including individuals with lived experience within research means that young people with mental health issues feel heard and in a way that allows them to feel that they are being understood and that research is actively attempting to assist those facing difficulties with their mental health.
Moving forward, researchers should be actively encouraged to include lived experience within their research projects and actively reach out to the communities that they are researching. This is because, if you are designing a chair for a 7ft man, it would make sense to engage with a 7ft man to check the fit and suitability of the chair. If you’re designing a product and service for young people with mental health issues, without any doubt, you need to similarly engage with the group to check fit and suitability. To me, it really is that simple. Too many times people with no lived experience make ill informed decisions which, whilst well intended, are unhelpful as they fundamentally are a solution developed without testing with the intended recipients. Interventions are complexed and expensive and can take years to develop. Progressing without inclusion of the views of the group the service is for, seems ill-advised, and doomed to fail.
Written by: Beckye Williams
Lived experience involvement lead on the PREVENTA study, at the University of Birmingham