They’re Not ‘Hard to Reach’ – They’re Tired of Being Reached

Written By Lisa Androulidakis

Why refusal in Black mental health research isn’t the end, it’s the start of a deeper conversation.

2-minute read

The fifth and final part in our ‘Is it community engagement or is it research series’. A guest blog By Chris Frederick – Mental Health Advocate, Project Soul Stride

 

This final blog in Habitus’ series might be the most uncomfortable, and the most necessary. Because while others explore how we engage, this one asks: do we even deserve to?

I’ve been in countless rooms where researchers say, “We just can’t reach Black communities.” And I’ve spent just as long speaking with those same communities who tell me, “We’ve seen what happens when we say yes.”

A few weeks ago, I read a Medium blog titled 'Why they said no'.

It hit home. Refusal isn’t apathy, it’s memory. It’s protection. It’s communities remembering how they’ve been over-researched, under-valued, and rarely shown the outcomes. When they say no, it’s not because they don’t care. It’s because they remember.

And I get it. I’ve been close to walking away myself from advisory groups where genuine co-production is replaced with performance. When we’re invited in but not listened to. When systems prioritise inclusion optics over impact. It’s frustrating. If I were running these groups, I’d make the priorities clear from day one. Participation must be purposeful, not just symbolic.

 

Idea: The Participatory People’s Register (PPR)

After nearly 30 years in recruitment, I know how to match people with purpose. So, what if we created a national, community-led register of people with lived experience who want to be involved in health research? It would flip the usual model on its head.

Imagine a platform where people choose the topics they care about (mental health, cancer, health inequalities)and researchers post genuine opportunities to collaborate. Not just one-off asks. Ongoing relationships. Built on shared values, clarity, and respect. Co-produced from the start. It’s not about fancy tech, it’s about trust.

Why does this matter? Because too often, people with lived experience are brought in too late, asked to “input” without being given influence, or feel like their knowledge is being extracted without respect. A model like the PPR could help rebuild that trust and create space for long-term, meaningful collaboration.

Ultimately, it’s about recognising that people aren’t “hard to reach”, they’re tired of being reached in ways that don’t respect or reflect their realities.

 

Tracking Impact, Not Just Attendance

Since July 2023, I’ve been in 43 focus groups and 27 consultations. You know how many led to real action? Six. That’s why I now keep an “impact log” and score every engagement out of five. Who followed up with me? Who showed that they care? Who co-produced something actually meaningful?

Some highlights:

We need more of this. If you ask public participation experts, what they really wish for from their efforts – they would likely say ‘to see the work across the finish line’. For that reason, I’d love to see an online symposium, open to public contributors and researchers, where we share what worked, where we failed, and how we can build bridges.

Because sometimes, “no” is the most powerful contribution of all.

 

BIO: Chris Frederick is a suicide attempt survivor, lived experience advisor, global citizen, and Star Wars fanatic. Through Project Soul Stride, he advocates for culturally grounded mental health reform, especially for Black men experiencing suicidality in the UK.

Want More?

This piece follows on from a live Habitus webinar that unpacked the practical and ethical tensions between “community engagement” and “community-led research.” You can watch the full webinar here. It wraps up our blog series where each post has brought a different lens, from trust and transparency to participation and power. This final piece asks us to sit with refusal, not as rejection, but as a radical invitation to do better.

Revisit Parts 1–4 for background, tools and turning insights into influence:

Ready to deepen your engagement practice and build genuine, lasting partnerships? Habitus partners with organisations across the UK, Canada and beyond, working with teams to develop the skills, frameworks and understanding needed to honour lived experience. Let’s grow together.

At Habitus, we have developed and designed successful community programmes for various charities, health organisations and local authorities and municipalities both in the UK and internationally.

We are accomplished in peer research, co-production, action-based and anti-oppressive research and evaluation. We are experts in helping organisations to engage wider community participation in their projects so that their work is more inclusive and impactful. Through this approach we are dedicated to increasing lived experience leadership.

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Lisa Androulidakis
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From Findings to Fuel: Turning Community Research into Real World Influence