Co-production in research isn’t just important, it’s essential, no longer an optional add on, and something that funders actively seek to ensure is part of each proposal. Research that is done alongside and in equal partnership with the people it’s supposed to be benefitting, is much more grounded in reality, and has a higher chance of having an impact.
To co-produce research, it involves the researcher handing over and sharing the power with people who have lived through, or cared for someone who has lived through, what they are researching.
It also involves not just using people and communities as case studies, but listening to what is important to us.
For example, in research about personality disorders, there is sometimes a misalignment in priorities between academics/clinicians and those of us with that label. Research I’ve read and studied, often focuses on symptom reduction, stopping self harm, and reduction in use of services. While this is important, functional recovery, misdiagnosis, harm reduction, critical perspectives, and meaningful relationships are rare and seldom researched. Although, thankfully, this is becoming more common.
To truly embody lived experience leadership, people with lived experience can actively shape the research questions, methods, and solutions.
What I wish people knew about personality disorder, is that we are human beings, a lot of us with unthinkable trauma, and we are all, like the rest of humanity, just trying to get through the day. Our feelings are always valid, even if our behaviour is at times unhelpful. We deserve support.
My message to people with a diagnosis of personality disorder, is that it’s not your fault. Your personality is not wrong. You are worthy, you are good enough, and there is hope. Small steps are important, and choosing recovery is always worth it. You can do anything you set your mind to, you are cared about, and your life is worth saving – especially by you.
My message to researchers is to not just to consult people with lived experience, but include us, upskill us, share power and resources with us – ultimately, let us lead – because our voices matter.
If you are interested in learning more about the Resolving Door Project you can send them an e-mail.