Moving beyond buzzwords to build systems that truly reflect and support the communities that use them

Co-Production of Project Soul Stride by Chris Frederick

When we talk about co-production, it can often feel like an ideal rather than a reality. Yet, my work on projects like Project Soul Stride has shown me that co-production is not just a methodology—it is a journey, one that requires patience, humility, and a willingness to embrace discomfort. It is about building relationships, challenging power dynamics, and making room for voices that have historically been silenced.

Project Soul Stride began as a Citizen Science initiative focused on understanding the Black experience of suicidality in the UK. Initially. I saw it as an opportunity to spotlight data and raise awareness of disparities in mental health. But as the project evolved, it became clear that it was about much more than data; it was about people. I have conducted over 150 conversations with stakeholders from the NHS, community organisations, academia, and grassroots leaders. Each conversation brought its own learning curve.

One of the biggest lessons has been the importance of listening—not just hearing but truly listening. Co-production if not done well i.e. done in name but not in practice can sometimes feel transactional, especially for those of us who operate in the ‘Lived Experience’ arena. The most memorable projects are those built on relationships. Building trust takes time, especially with communities that have historically been overlooked. I realised that asking questions was not enough. I constantly need to think of constructive feedback that could lead to tangible actions, no matter how small steps.

As a black man working in mental health advocacy, I have often found myself navigating the tension between being a voice for my community and ensuring I am not the only voice in the room. Co-production requires us to challenge tokenism. During Soul Stride, I learned the need to push for others to step into co-production roles. It is not enough for me to be involved; I needed to help create pathways for others.

Co-production often talks about "levelling the playing field," but in practice, power imbalances are everywhere. From funding decisions to meeting agendas, it is easy for statutory services or academics to dominate the narrative. One of the biggest challenges I face is literally being the only black face in so many meetings. The stress it puts on us to speak up and out without fear of reprisal or further marginalisation. There are two things that often make me feel slightly negative is.

1. No one has ever asked me ‘what skills do you think you need to learn to provide even more contribution to co-production?’
2. No one has ever asked me ‘what are your personal goals and objectives and how can we actually support you?’

I mention these two things as they foster equal partnership and not just one-way traffic. Co-production is not linear; it is a relational journey. During one phase of Soul Stride, I realised that an important group of academics simply were not engaging because they didn’t have enough time due to research commitments. Rather than me pushing too hard, I reprioritised my target groups, which led to even more new voices.

This relational approach is something I have carried into other projects, like my work with Mind and Imroc. Whether it is creating films about finding help or consulting on peer support models, I have seen how prioritising relationships over deliverables leads to more meaningful outcomes.

The lessons I have learned from Project Soul Stride and other co-production initiatives have shown me that this work is about more than just improving systems—it is about changing mindsets. Co-production is not a one-off event; it is an ongoing commitment to equity, inclusion, and shared ownership.

As Gemma and I continue to look to the future, we hope is that we move beyond buzzwords to build systems that truly reflect the communities. That means investing in relationships, challenging power imbalances, and—most importantly—ensuring that co-production leads to real, tangible change.

haPPIE: SHE Cares Project by Gemma Poole

The haPPIE: SHE Cares project is an innovative and collaborative initiative aimed at transforming perinatal mental health care for Black and Ethnically Minoritised women. haPPIE stands for ‘holistic approach to Patient and Public Involvement and Evaluation and SHE stands for ‘sharing healthcare experiences’. Rooted in the principles of equity and inclusion, this project seeks to address systemic barriers to mental health support, offering culturally sensitive solutions that are both practical and impactful. By combining digital tools, community-based support, and patient and public involvement (PPIE), haPPIE: SHE Cares creates a pathway to accessible, effective, and meaningful mental health care during the perinatal period.

This project is more than a response to the unmet needs of underrepresented communities—it is a movement inspired by the voices and resilience of those often excluded from traditional healthcare systems. By working collaboratively with community leaders, healthcare professionals, and technology innovators, haPPIE: SHE Cares aims to bridge the gap between underrepresented communities and the healthcare services they rely on.

The haPPIE: SHE Cares project emerged from a deeply personal and collective understanding of the barriers faced by underrepresented communities in accessing mental health support. Its foundation lies in stories shared by focus group participants in the haPPIE Research Group, whose lived experiences shed light on the gaps in healthcare systems.

One story came from a man who courageously shared his journey through emergency heart surgery. However, as his family listened to his account during the recording process, they found themselves retraumatised by revisiting the events. He ultimately withdrew, highlighting the emotional toll that healthcare trauma can have—not just on the individual, but on their entire family.

Another poignant example arose from the aftermath of race riots, where women were too frightened to leave their homes. The resulting isolation and fear had a profound and detrimental effect on their mental health and that of their families, particularly among those who faced language barriers or lacked understanding of how to navigate healthcare systems. For these women, the lack of access to culturally appropriate support exacerbated their vulnerability, compounding their sense of being invisible to the systems meant to protect and care for them.

The inspiration for haPPIE: SHE Cares also comes from the experiences of community group leaders like me and my peers. Many of us carry the burden of supporting individuals with undiagnosed mental health crises including trauma, or PTSD. For community leaders, this work is often a "calling," done voluntarily and without recognition, despite the crucial role we play in holding up networks that underrepresented communities rely on to survive. These leaders, invisible to healthcare systems, are themselves unsupported, making their vital work even more challenging.

At the heart of the project is a commitment to involvement of patients and the public and evaluation. Through bi-weekly feedback sessions, co-creation workshops, and ongoing engagement, participants have shaped tools, training, and pathways that genuinely reflect the lived experiences of Black and Ethnically Minoritised women.

Key components of this project include the involvement of diverse community group leaders, ensuring that the resources and strategies are not only relevant but also trusted. These leaders facilitate discussions, gather feedback, and empower women to access mental health support. The project also emphasises the importance of storytelling as a healing tool. Through the haPPIE: SHE Cares toolkit, participants learn to share their experiences safely, reduce stigma, promote resilience, and create a sense of belonging. Every element of the project is designed to respect and reflect the cultural contexts of its diverse users.

The co-production approach ensures that haPPIE: SHE Cares is not just another project but a movement toward equitable mental health care. By focusing on collaboration and lived experiences, it paves the way for communities and professionals to work together. This approach builds trust and bridges the gap between healthcare services and underrepresented communities, proving that meaningful change is not only possible but inevitable.

Main image:  Photo Credit Canva