Building trust – and choice – in cervical screening

Cervical screening saves lives, but many people still don’t attend. That’s why national policy now backs self-sampling for those who rarely or never come forward. Our researchers collaborated with clinicians, advocacy organisations and people from more marginalised communities to build the evidence to redesign screening to be more inclusive, accessible and effective – on people’s own terms.

How the impact happens 

Impact starts with relationships – especially when trust has been broken or people feel more excluded than others in society. In Greater Manchester, that has included people living with learning disabilities, ethnically diverse communities, the LGBTQ+ community, and those with past negative experiences of speculum‑based screening – groups who repeatedly report barriers to attending appointments.  

Rather than designing solutions behind closed doors, the research team worked alongside representatives from these communities, learning what needed to change by listening carefully and consistently. 

For Jan Owens, Research Fellow in Nursing and Midwifery, that meant slowing the work down and meeting people on their own terms: “Getting to know people as people, not as people with a label, is very important. Trust begins with people being included in what’s going to happen.” Early meetings were about conversation, not outputs – sharing food, discussing everyday life and giving people time to decide whether they wanted to be involved. 

Emma Davidson, Professor of Gynaecological Oncology, faced a parallel challenge: developing new screening options without assuming they would be acceptable. “What if we’re developing something that people don’t actually want?” she recalls. That question reframed the research. Instead of pushing ahead, the team showed communities proposed solutions – including urine-based HPV testing – and listened closely to their responses. 

Trust in action

Working this way meant letting go of familiar academic control. Community members shaped scripts, challenged language and adjusted processes when something felt wrong. When gender-inclusive language attracted hostile media attention, the team stood firm. “Using gender-inclusive language was extremely important in encouraging people to trust us,” Emma explains, even when that choice created tension. 

Researchers, NHS staff, translators and community partners learned to adapt together. As Jan puts it: “Without the people who support these communities, we’d have made assumptions and got things badly wrong.” What emerged was not a single intervention, but a shared way of working – one where impact grew from listening, humility and collective ownership. 

Moving forward 

This work is entering its next phase with the same principle that guided it from the start: staying close to communities and letting their needs shape what comes next. The team is building on the evidence generated so far to support conversations about more flexible, personalised cervical screening pathways – including urine-based HPV testing as an option alongside existing approaches, with ongoing support from the NIHR Manchester Biomedical Research Centre (BRC).

For Emma, the focus is on turning evidence into meaningful choice: “We now need to try and affect policy change. There’s no point in doing research that doesn’t benefit anybody. This is about making a difference.” This includes continuing to gather data on effectiveness, cost and acceptability, while working with screening bodies to argue that one size does not fit all. 

Fortunately, national studies (HPValidate; YouScreen) already provide strong evidence that self‑sampling is accurate, highly acceptable to most participants and, crucially, can reach those who do not attend appointments. In addition, the UK National Screening Committee recommends offering self-swabbing to under‑screened groups, with plans for NHS England roll‑out from early 2026.  

The team also plans to adapt co-produced resources for new communities, supporting NHS teams with reasonable adjustments and sharing learning with partners nationally and internationally, including collaborators in Kenya. 

As the work grows, the team’s commitment remains the same: moving at people’s pace, shared ownership and ensuring that impact isn’t something measured because funders ask; it’s something communities shape for their everyday lives.