HPV self-sampling: how can we help people to make an informed choice?

Last year we conducted in-depth qualitative and deliberative research (in partnership with NatCen) to understand better the information needs and preferences of people when offered a choice between HPV self-sampling for cervical cancer and the current norm of having a screening sample taken by a healthcare professional in a clinical setting. The research was commissioned by the UK National Screening Committee, which is hosted by the Department of Health and Social Care.

Many of our clients and partners across the cancer screening world have expressed an interest in the insights gathered through this research. Now that the research has been published in full on the gov.uk website, we are providing a summary of the key insights and recommendations.

A total of 88 people took part in the research through focus groups, interviews and deliberative workshops. The sample was intentionally diverse, including participants of different ages, ethnicities and educational backgrounds, as well as groups that are often underrepresented in research or face barriers to cervical screening, such as people with disabilities, those living in rural areas, and trans people.

Across all phases of the research, three common themes repeatedly emerged as the foundation of effective communication about HPV self-sampling: credibility, clarity and choice.

Credibility: building trust

Trust was central to decision-making. Participants wanted to understand why self-sampling was being introduced and how it compares with clinician-taken screening.

Questions about accuracy, reliability and effectiveness were common, and many people wanted transparent explanations of the evidence that supported the introduction of the new option.

Importantly, participants did not simply want reassurance. They wanted honest information, including acknowledgement of any uncertainties regarding existing evidence about the two methods and clear explanations of what is currently known and not yet known. Many also expressed interest in learning how self-sampling is used in other countries.

Privacy was another consideration. Participants wanted reassurance about confidentiality, including how samples and personal information are handled and protected within the screening programme.

Clarity: making information easy to understand

Participants were clear that information must be simple, practical and accessible. They wanted straightforward explanations of how self-sampling works, what the kit contains, how to take a sample correctly and what happens afterwards.

Visual aids were seen as particularly valuable. Step-by-step instructions, diagrams, videos and plain-language guidance were all viewed as important tools for increasing confidence and reducing anxiety.

The research also highlighted the importance of explaining results and follow-up pathways clearly from the outset. Participants wanted clear information about what different test outcomes mean, when further appointments or tests may be needed and the difference between testing positive for HPV and receiving a cancer diagnosis.

Access to helplines, online information and opportunities to seek professional advice were all viewed as important, particularly for people who may feel less confident about using a self-sampling kit or who face additional barriers to screening.

Choice: supporting informed decisions

Perhaps the strongest finding was that people wanted self-sampling to be presented as a genuine choice rather than a recommendation. Participants valued autonomy and wanted communications that enabled them to decide which screening method best suited their own individual circumstances.

Many favoured side-by-side comparisons that clearly outlined the similarities and differences and pros and cons between clinician-taken screening and self-sampling. Neutral, factual language was preferred over messaging that appeared to steer people towards one option.

Wider implications

While this research focused on cervical screening, its implications extend beyond this single programme. When introducing new health interventions, people need more than information alone. They need communications that build trust, explain complexity clearly and respect individual autonomy.

The findings indicate that effective health communication is not about persuading people towards a particular choice. It is about providing credible evidence, clear explanations and meaningful support so that individuals can make decisions that are right for them.

The full report is available here.