Want to find out how you can share your personal experiences of mental health challenges to inform mental health research? Adeola Agunbiade shares her top tips about how you can find these opportunities.
Lived experience advising is applying your unique perspective and experience gained only through first-hand knowledge of a mental health condition to advise on mental health research. Advice from a lived experience perspective can help researchers change their research work from theory to practice.
Research involvement can take on many forms. It could be:
- sharing your experience in a mental health podcast to help disseminate results from a study
- reviewing research work and seeing how findings align with your own personal experience
- sharing your views on research work in meetings
Working as a lived experience advisor opens you up to many opportunities. It’s diverse and rewarding. It gives an opportunity to share your experience in ways that improve mental health research, and you often get paid for your expertise. This helps us feel valued and important.
This is especially rewarding when you come from a background where mental health problems are stigmatised. You will meet other people with similar experiences, which can help reduce feelings of isolation. With every research project I have worked on as a lived experience advisor, I have become more comfortable with my mental health condition and the feeling of being stigmatised has significantly reduced.
Interested in joining a lived experience advisory panel but don’t know where to start? Here are my top tips.
Join mental health research mailing lists
UKRI Mental Health Research Networks
Although many of the networks are winding down, some still have active mailing lists with chances to have your say in research. By joining these networks you can access opportunities in the members-only newsletter, including chances to join lived experience panels. Find out more here.
McPin Lived Experience Advisory Panel (LEAP) or Young People’s Network
McPin aims to champion experts by experience in research to improve mental health. If you are a young person under the age of 25, through the McPin Young People’s network, you will hear about opportunities to have your say in research, many of them paid. Involvement in these opportunities usually only requires lived experience and a passion for improving mental health. Additionally, McPin often provides support to make involvement as comfortable as possible by informing researchers about any adjustments you may require. McPin also ensure you have support systems in place due to the sensitivity of the topics discussed in these involvements.
Opportunities via McPin aren’t limited to young people. If you’re aged over 25, there are plenty of chances to get involved with research too. McPin has a Public Involvement in Research program that works with advisory groups and aims to promote expertise from expertise in research. McPin offers an involvement bulletin with plenty of opportunities. One of these is the Lived Experience Advisory Panels ( LEAPS).
Global Mental Health Action Network
This network focuses on collaboration. It encourages and enables people with a professional interest in mental health and policy to connect with others with similar interests. The network allows members to post opportunities for collaboration, funding, and all things mental health. These postings allow persons with lived experience the opportunity to find research opportunities that require their lived experience expertise.
The LinkedIn page contains information on how to be a member of the network.
Global Mental Health Peer Network
This network specialises in lived experience and mental health advocacy. Its focus is on lived experience in all aspects of mental health, including research. Amongst other things, it creates a platform where people with personal experience of mental health problems can share their experiences. It is also an opportunity to be part of a globally represented lived experience organisation to drive change around the world.
The network opens a window of opportunity once a year to be a country representative in the country leadership committee. This position is open to anyone with lived experience of a mental health condition in the initial stages of their advocacy journey and would like to be more empowered to advance advocacy on a global level.
Of course, the above list is not exhaustive but it is certainly a good starting point and a guide.
Maximise social media platforms.
Social media platforms provide valuable help for a number of things and joining a lived experience advisory panel is not an exception.
My favourite place for finding them is Twitter. Many mental health organisations have social accounts and share application links to lived experience panel opportunities. This widens the range of opportunities you can access by just checking one organisation’s Twitter account.
Other mental health advocates who are often lived experience experts also share research opportunities on Twitter.
Pro tip: use keywords to search on these platforms to lead you to discover plenty of opportunities, including:
- Young people
- Youth engagement
- Young people involvement
- Lived experience with mental health
- Mental health research
- Co-production (a term used for research that works with people with lived experience from start to finish)
Reach out
Don’t be afraid to reach out to people in the mental health space. An exceptional quality among mental health advocates is a willingness to help. So, aside from following their social media posts, creating a personal relationship with other lived experience experts allow you to benefit from their wealth of experience and learn some tips about opportunities. I have benefited from reaching out. Fellow lived-experience experts who have also been involved in research have shared their personal experience of involvement and how such involvement were possible by their efforts, some have also shared links to research opportunities to apply for
Volunteer
Volunteering is a great way to meet other mental health advocates and hear first-hand about being on lived experience panels. And you also get to use your unique perspective from your lived experience to impact lives and make the changes you want to see.
I volunteered at a mental health organisation in the planning and organising of its yearly mental health workshop. Apart from the feeling of contentment volunteering has given me, volunteering has helped me during several application processes to be on advisory panels, because it has shown my passion for the subject and my willingness to use my lived experience to improve mental health care.
Making these steps to join a lived experience panel can be daunting at first but rewarding in the end. I have learnt how to work with researchers and other lived experience advisors from many countries. Some of whom have now become my friends. And getting paid for what I love doing certainly hasn’t been bad. Using the above tips, take the leap and help shape research.
The #MentalHealthResearchMatters campaign celebrates the work of eight networks, find out more about them.