What Is Co-production?
From my involvement in research, I understand co-production to be a collaborative process where individuals, regardless of race, expertise, or background come together to contribute meaningfully to a shared cause. For me, co-production means, “Hey, I have an idea, and I’m empowered to share it to improve this cause,” or “I can redirect a researcher’s focus toward something important they might be overlooking.” The National Institute for Health Research (NIHR, 2021) defines key principles of co-production as: • Shared power and joint decision-making • Valuing everyone’s contributions • Reciprocity (everyone benefits) • Building and maintaining strong relationships
Co-production in Mental Health Research
In mental health research, co-production means engaging people with lived or living experience, whether as patients or caregivers alongside professionals to design better interventions. For example, It’s a way of saying “i had major depressive episode last year, and seeing that a project related to medications to improve the lives of those living with depression is about to be funded, i have the right skills/experience to intervene in the prioritization so i can guide the direction of the funding”
In August 2024, I was invited by the GALENOS team to participate in a prioritization exercise for a Living Systematic Review on Trace Amine-Associated Receptor 1 (TAAR1) agonists for psychosis. This process involved rating priorities and recommending what should receive funding. Recognizing that not everyone has a science background, the team hosted an introductory session to explain the technical content in an accessible way.
Methods
Several 90-minute meetings were held to co-develop research questions based on our recommendations. While we initially planned to meet twice, we added an extra meeting to allow deeper discussion and better group consensus. Our feedback was valued, and our suggestions shaped the project.
What Stood Out for Me?
Human Compassion: During the process, I received tragic news from home and couldn’t attend one of the meetings. I emailed Emma to inform her that i may not be present. Emma’s show of compassion gave me that thought that “hey, i got you”
Representation: As a person of color and someone from an underrepresented background in research, I felt truly heard. This was my first major involvement in research, and it showed me how powerful representation can be. My thoughts? If Africans and people of color shy away from sharing their experiences to influence research and funding, we risk being excluded from treatments that consider our unique genetic and cultural contexts.
Fair Compensation: Everyone involved was treated equally. Payment was transparent and fair.
Knowledge Gain: The facilitators shared insights into psychosis and why the research mattered. I also learned from fellow consultants. That short experience influenced my decision to pursue a postgraduate program focused on “food for the brain,” strengthened my resolve to grow Mentally Resilient Youth Network (www.mrynetwork.org), and deepened my involvement in global mental health advisory roles.
In short, I can confidently say: “This co-production exceeded all my expectations. It’s the most involved I’ve ever been in anything. Normally, our input would just be quotes in a paper. This time, we helped shape the direction.”_
Why Involve Lived Experience Advocates in Funding Decisions?
Expanding involvement is essential to designing impactful research that closes real gaps in mental health care. Involving people with lived experience enhances autonomy, empowerment, and resilience. It turns personal mental health journeys into social value. Regardless of whether they serve as consultants, advisors, or board members, individuals with lived experience contribute uniquely valuable insights. They are now widely recognized as key players in service development, delivery, and leadership (Sunkel & Sartor, Reference Sunkel and Sartor2022 ).
Key Areas of Lived Experience Involvement in Research
• Setting research agendas • Shaping funding priorities • Participating in governance and accountability structures
Collaborating with a diverse group of lived experience experts from start to finish on a funding application led to real impact in this instance. I encourage more individuals with lived experience to join co-production efforts. I also call on private and public funders, including grassroots governments, to support research that centers lived experience, not just as a checkbox but at the front, back, and centre.