From patient involvement to Co-production: Reclaiming power in research and reproductive justice.

Why this conversation matters

In health and academic spaces, we hear a lot about Patient and Public Involvement and Engagement (PPIE), consultation, and now co-production. These words sound similar, but the difference is more than semantics. That gap shapes how people are invited in or kept out of decisions that directly impact their lives.

At Cysters we moved past traditional patient public involvement and engagement into co-production not because it’s fashionable but because it’s the only way to honour the realities of the communities we serve. Long before we knew the jargon in the research world, we were simply making sure our work was built with people, not just about them.

We work alongside those most ignored by mainstream research and service provision: racialised women, trans and nonbinary individuals, disabled people, those living in poverty, people whose reproductive or menstrual health experiences have been dismissed or disbelieved. Our learning is clear there is no genuine inclusion without equity, and no equity without power sharing.

When “involvement” becomes extraction

Every week an email lands in my inbox from a researcher I’ve never met.

“I’m running a study with ‘hard to reach’ BAME (Black Asian and Minority Ethnic) communities and would love to recruit through Cysters.”

There is no hello beforehand, no relationship building, no history of supporting our events or even showing up to listen. No attempt at wanting to know more and building with us. Just a request to “access” our community as if it’s a database. These copy and paste messages they carry a quiet harm. They ask us to offer trust without relationship, to spend emotional labour without recognition, all without any recognition or benefit to us.

I’ve learned to pause before responding because the ask can feel like another extraction. It reminds me how easy it is for research to replicate the very inequities it claims to challenge.

Building Sangat, not surveys

Co-production for us starts with Sangat a Punjabi word rooted in the Sikh faith for community. We build relationships before projects. We use creative, trauma informed methods like poetry, dance, and storytelling so people can share health experiences on their own terms. Things we remember researchers often felt were “woowoo” and not real ways of engagement, times have really changed. We pay people including our own team for their time, expertise and emotional labour.

This is slow, often messy work. It doesn’t fit neat funding timelines. It is exactly what makes the research meaningful.

A mother from our recent Glass Painting South Asian Heritage Month Event on patient public involvement and engagement, sponsored by Warwick University and supported by Dr Claire Mann put it simply:

“This is the first time I’ve felt my story and thoughts about research wasn’t just taken down, but truly heard.”

That is the heart of co-production.

Inclusion is an ethical imperative

Inclusive design is central to ethical, impactful research. Responsibility for inclusion sits with researchers and institutions, not with communities.

• Active exclusion happens when deliberate barriers like narrow eligibility criteria keep people out. Ethics boards usually notice these, because they are more obvious.
• Passive exclusion is more insidious: hidden design flaws such as inaccessible language, inconvenient timings or digital only participation. These often slip past ethics review entirely.

Marginalised groups are never to blame for underrepresentation. Exclusion stems from structural barriers and inaccessible research design. Ethics review alone does not guarantee good representation. Research systems must adapt; communities should never be asked to conform.

Diversity on a patient public involvement and engagement group or research team is not the same as inclusion. Without shared power and resources, “representation” becomes a box ticking exercise and tokenism is the inevitable result.

Lessons in power sharing

I’ve sat in rooms where power was not shared where community voices were invited to decorate a plan already written. The hurt lingers. People leave feeling tokenised and wary of ever engaging again. Because what the point when the decision has already been made?

It taught me to ask early and often:

"Who holds the pen? Who sets the timeline? Who gets paid and credited? Are we even included in this?"

If we can’t answer those questions with honesty, we risk repeating harm.

Partnering with grassroots

True inclusion requires partnership with grassroots groups like Cysters. We bring trust, access and lived experience insight that can’t be parachuted in at the end. But partnership means relationship and respect, not convenience.

Researchers often underestimate the work behind that access years of listening, showing up, and creating safe spaces. Without it, even the most diverse recruitment plan will falter.

Doing co-production well

• Be honest from the start: Call it consultation if that’s what it is.
• Budget for equity: Training, childcare, translation, tech support, and fair pay are not extras.
• Involve communities early: If the funding bid is written before engagement begins, it’s already too late.
• Share authorship and visibility: Cowrite papers, co present findings, because why wouldn’t community members want to be involved in this? Let communities co own the narrative.
• Prioritise relationships over outputs: Trust cannot be rushed or retrofitted.

So, if you are a researcher or funder, pause for a moment.

• When was the last time you attended a community event with no agenda but to listen?
• Have you built relationships before asking for participation?
• Are you prepared to share decision making and credit?

These reflections matter more than any ethics form.

Changing the landscape

I want to see a future where participatory research isn’t a checkbox but the default. Where grassroots organisations lead alongside universities. Where ethical research means relational accountability, not just compliance.

At Cysters we’re not here to be a convenient gateway. We are here to rewrite the rules so research answers to the communities who live the realities every day.

About the Author

Neelam Heera-Shergill is the founder of Cysters, a grassroots menstrual and maternal justice charity supporting racialised and marginalised communities. She is a TEDx speaker, advisor, and community researcher advocating for co-production, health equity, and antiracist policy reform. You can contact her directly on smile@cysters.org or via LinkedIn.

Image credit: Canva